Tuesday, February 28 2017
"Nothing can dim the light that shines from within"
I have heard this quote time and time again, often stopping to reflect on what it means for me. On days like today, where approximately 350 million people worldwide come together to shed the light on World Rare Diseases Day and helping to raise awareness of the different rare diseases by giving patients a voice to share their lived experiences.
For me, everyday is rare disease day and I am reminded of that several times a day.
But it is important for me that while I try my best to share my story to educate, empower and inspire others on their own journeys, that I know that all of this doesn't define me and I that I am not my disease(s).
I don't live with one rare disease but three, which have all attributed to different health issues mostly chronic, but these have helped to shape me into the person I am today.
One thing being rare has taught me is that I am resillient.
I live a life that is different to that of my peers, it has often felt lonely and isolated, but there have been times where it hasn't been. I know Facebook changed my life for the better, it helped me to find and connect with people online who understood... because of Facebook, I was no longer alone as I navigated my way forward.
However, being in online support groups can be rather destructive at times especially when you are struggling with your illness or your identity or if you are in a very vulnerable place yourself. Sometimes Facebook can be an escape and safe space for people whether it is sharing/venting with people who 'get it' or if you are wanting to share your story or progression of your disease; it can also be too confronting to some who are finding it difficult to come to terms with their own prognosis or are using Facebook as an escape from their reality and it can feel like your disease is everywhere you look.
For me, I have experienced the latter quite often and especially of late.
I log on to Facebook to just catch up on the happenings of family and friends, when I get a notification of someone posting in the group or see a post on my newsfeed; It is a post that someone from the group has died from the disease (that is going to be responsible for killing me too one day) and it got a little too real for me to handle because it wasn't the first post of that day and it wouldn't be the last.
Somedays when there are reminders of my reality when I am already in a vulnerable state is really hard to come to terms with.... I am not in denial that this disease will not kill me as I know it will, but when my resillience is low is when it feels like everywhere I look all I can see is reminders of the disease(s) and death.
It is moments like these where I remove the notifications of the group and hide them from my newsfeed, at least until I am in the mindspace where it isn't taking over my life - especially my online life - as I need to be able to feel safe. This is my way of self-care.
At times it is admitting that I need to feel safe from myself and the thoughts within.
But just because you are in these online groups of your own community, doesn't mean it has to rule over your life. You don't have to be in these groups to know everything to say to everyone, as there isn't always the right thing to say (and it can get exhausting REAL quick). It is okay to be the member who actively listens to people when they need to vent or you can be there to help celebrate their wins by simply liking their status to acknowledge it, knowing that one day it could be you who needs to talk and just have someone who gets it listen without necessarily saying anything.
It is up to you how you find value in support groups, remembering that you'll never truly be alone and that when you need help you have a village to help you can be a huge comfort on your journey with a rare disease.... I know it is for me.
Prior to 2010, I had never heard of FAP or that young people could get bowel cancer afterall my dad was only 39! My doctors had informed me that I was their only patient with FAP and only known case in the area (I later in 2016 learned that there were another family), but in my feelings of isolation and desperation for answers, I came across groups on Facebook where there were other members who either had FAP themselves or had a loved one living with it and joined. The group was all over the world and I spent time learning about others' epxperiences so that I had a better idea of how things would be or what to expect.
Then in 2012 my dad died, later that year I learned that I had early stages of bowel cancer and would need all of my bowel removed. I was told I needed a permanent ileostomy and found myself feeling alone again. I was given material about life with a stoma, but it all related to being over 50 which I as a 21-going-on-22-year-old could relate to.
So I started my blog to try and inspire other young people with a stoma through being ostomistic, a word I stumbled across one day when I tried to say optimistim with a stoma. I began writing blog posts about my journey, tips and tricks I had found, and also using my platform to try and empower others to make better decisions for their health through raising awareness.
I mostly assumed people were reading it as my stats told me so but ocassionally someone would comment or contact me to say thank you for helping them, which helped me to feel that all this was worth it and wasn't wasting my time.
Then one day it lead me to one of my best friends who I later realised I couldn't imagine life without her, probably one of the greatest things to come out of my blog journey.
I later had this idea to create an online magazine for young ostomates as a collaboration between other ostomy bloggers, ostomy businesses or ostomy professionals to help deliver content that is relatable for young ostomates to help them to navigate life with an ostomy. This officially launched earlier this month and has been well received worldwide!
But while my rare diseases have altered the life path that I had envisioned for myself, it sure has given me the empowerment to take back control of my life and to look for the opportunities in each day. I wouldn't have started my blog, an online magazine or aspiring to be a inspirational/motivational speaker.
By not letting my disease define me, I was able to find the real me... and I have learned to love myself and find self-worth which was something I never had before.
I am not my disease(s)
I am rare
I am me
and therefore I am unique!
p.s what is one thing you have learned as a result from your rare disease?
Saturday, February 18 2017
One of the ways I got through my teenage years, was with the hope that one day I would meet my prince charming who would make me feel like a princess, his princess. I romanticised every encounter or relationship I had, always invested in that perfect rom-com moment where I fell in love and lived happily ever after.
My friends thought I was just setting myself up for disappointment and yet again heartbrake, where they would be needing to pick up the pieces and glue me back together... my friends were good like that. They also became rather protective of me too.
So fast forward to 2009 (18), where I desperately needed a laptop as mine was drowned in the (then) recent floods and was hard to keep up with the demand of uni assignments when you didn't have a laptop.
I headed into my local electronics store, walking past the door guy who looked more focussed on watching the latest movie that was showing on the massive LCD TV's that were covered with signs that made you think it was a not-to-be-missed sale, never to be repeated. I walked past the out of service vending machines and an independant ATM machine, one of those "we will charge you $2" to proceed types. I walked through the camera and telco departments when I finally found the computer department.
I wasn't sure what to do, since this was my first "big girl" purchase without a parental unit chaperone. I just stood there lost and staring at the 50+ options of laptops in front of me, confused as to what do I do next.
I wasn't standing there long when this salesman approached me. He was fairly tall, which wasn't a hard thing to notice since I am 5 foot 2", was rather skinny and wore an old set of glasses that looked to be 10 years old. He seemed shy, yet when he spoke about computers it was as if he just looked alive with passion; and there was this look in his eyes when he spoke, that you could trust what he is saying as the truth and not just a sales pitch to try and close the sale... he was really genuine and honest.
Even his attire and how he presented himself made me feel he was humble, down to earth and kind of daggy, which I liked; he didn't feel pretentious at all... just genuine what you see is what you get kind of guy and I admired that. He wore a black collared work shirt that had these weird pleats in the side with a yellow panel (I would later learn these were a massive pain in the ass to iron), the jeans he wore were a light denim in colour and he rolled the bottoms of his jeans up so they sat around his ankles.
I had this immediate sense that he cared about the customer, in a way that he didn't want you buying something you didn't need and he kept trying to talk me down from the higher end of scale laptop that I wanted but didn't necessarily need.
However, as a broke and unemployed uni student I thought I would try my luck at financing a laptop since desperate times called for desperate measures. I was falling behind in uni, so I was willing to consider any avenue possible to get a new laptop and get back on track.
So it wasn't very surprising when I was in fact declined for finance, I even went so far as to try EVERY way possible but I was out of luck.
I didn't want to leave empty handed, so I worked up the courage to ask for his number, which without hesitation refused and said something like "it's against store policy as you applied for finance if I were to take your number". I called bullshit, but he still refused.
But I was utterly confused as to why, I felt we had hit it off. We had chatted and laughed for hours while I attempted to finance the laptop, even had our own inside jokes.
There was just something that in all his honesty, that I felt was sexy in a guy... considering every guy I had met to date were douches who were either so focussed on looks and appearances, were the dangerous boy types who were forbidden (which made them more attractive), were the sporty jock types who prioritised their sports over your relationship, or the mum's boy types.... so it was rather refreshing, and a welcomed adventure when I encountered this kind, funny, considerate, nerdy and genuine guy.
But it ended there.
For the next 3 months I would try and utilise the shared computers at university and applying for credit cards or scholarships to try and help me to fund the laptop, but often I would be waiting for a long time for my turn for the computer in a line.
When I did win a scholarship at the begin of semester 2 I dreaded the thought of returning to the store and in the event that the sales guy remembered me it would be so humiliating. So I decided to dye my hair a purple/burgundy colour and to cut it really short in the hopes that he wouldn't recognise me.
I felt so confident and headed into the store, meandered the recognised path towards the computer department and was rounding the corner into the IT section when he saw me. Instantly dreading this and realising it would be rude if I just pretended I didn't see him, I walked towards him and smiled.
He smiled back and said "It's Talya, right?". Muttering a few curses, I replied "Umm yes, it is". He continued by saying "I told myself if you ever returned that I would get your number, I have regretted it every day since".
So that time I actually left with my intended laptop, his number and the hope that maybe this dream of falling in love might come true afterall.
Just like any rom-com movie it isn't always smooth sailing and theres a few bumps along the way, often tragedies, that can bring two people closer together or can tear them apart... and that has been our story, one heck of an epic love story that should really become a feature film.
We started dating knowing full well that a month later I would be having my first brain surgery, which led to multiple surgies and a 3 month hospital stay and also our engagement at just 3 months together.
On our 12 month anniversary we were married, it was an intimate gathering and budget friendly, but it was also simple in the way that there was no fuss and it was a low-key affair surrounded by those we love dearly. It was a day where we wanted it to be just about us.
But we have faced our fair share of loss and stress: misscarriage; diagnosis of my dad's cancer and learning I inherited the gene; being held up at work and struggling to come to terms with anxiety and a diagnosis of borderline personality disorder; finding out that I have severe stage IV endometriosis and as a result I am unable to have children; a week later learning at 21, I have early stage bowel cancer and would need surgery to remove my bowel; months later had surgery and my first ileostomy surgery was had, survived being close to deat and learned to adapt to life with a stoma; getting severe recurrent pancreatitis rendering me in hospital for the next 12 months; discovering a large tumour where my bowel used to be; thyroid cancer and subsequent thyroidectomy, again close to dying; learned I now had another tumour that was growing rather quickly; started chemotherapy and spent more time in hospital which led to tumour needing to be removed as it was dead and my body was decaying; resuming chemo; learning I had 2 large blood clots; a new tumour discovered on my ovaries; chemo stopped and entered palliative care.
I am sitting here in tears, as I have been moreso the last 6 months, as I just don't know if Russ is going to be okay.
Russ has autism and if it has taught me anything in our relationship of 8 years is that he doesn't cope with change well. We moved house and it took me 12 months of building him up for it as change is unsettling for him, he is only just settling in with his new routine and it has been 5 months. He even had his learners for 20 years and got his p's last year and I was so incredibly proud of him, it gave him independance and took a lot of pressure off from me and meant that I can focus on my pain management and not needing to worry about driving.
He told me recently that he is so proud of himself and that he appreciated me being patient over the years to research how to help and encourage him to embrace change. I read up on autism parenting blogs to help, even though he was an adult I found some of their advice helped me.... I learned patience and to try and do things differently.
He also doesn't cope with his emotions very well, he struggles understanding what to do with them and death usually leads him to shutting himself out from the world. He doesn't know how to deal with what he is feeling and as a result can lash out or just become more recluse than he already is... I saw this when my dad died.
I have started studying counselling so I can learn coping mechanisms to teach him, I know he won't be okay as much as I wished he would be, but I am trying my best to help him.
It's rather upsetting and stressful feeling all this guilt that I have, that we have built the most incredible lives together and lived the most epic love story and it is going to come to an end. I worry about him financially and if he can manage.
He conversed with his boss yesterday about what happens in the end when he needs time to grieve what is available. He has been so worried that he might not be ready to return so quickly after my death because he has no more leave and would take leave without pay and as a result would not be able to pay the mortgage... and he has been rather anxious about all this.
So I spent so much of last night crying, because I feel guilty.
I feel guilty that he is having to worry about all this, that he has limited time to grieve before having to pull himself together to go back to working, all because I didn't have life insurance. It is one of my deepest regrets and I feel like I am irresponsible as a result. I only have under $3k in super too. Even on our homeloan the bank wouldn't cover me with insurance, 'cause terminal cancer and all the credit cards are in his name not mine so that won't even be a relief.... it is such a worry and stress.
I just hope he will have support, I imagine he will in the initial week, but I worry what will happen after that.
Saturday, February 04 2017
The moment is here - The magazine was born!
Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.
When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!
I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!
I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.
Thank you for sharing in this exciting moment and happy reading.
ISSUE 1 | The Ostomistic Life eZine
I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)
If you love it let me know.
Work on issue 2 has begun, click here to sign up to receive the next issue straight to your inbox. For articles I am looking for or if you have a topic you want to discuss please get in touch. Some ideas can be found via the pinned post below or on the facebook page.
Wednesday, February 01 2017
Hi and welcome to the first issue of the Ostomistic Life eZine prizes. Please find below some giveaways that might be of interest to you or if they are of interest to a friend please feel free to refer them to this page.
Prizes - up for grabs
#1. WIN 1 OF 2 $50 iTUNES CARDS
#2. WIN $25 VOUCHER TO SMUDGE DESIGNS
#3. WIN A MINDFULNESS CARD SET
Each set is kept safe and snug in a handmade linen pouch wrapped in twine with a clear quartz crystal.
To enter simply comment on the Facebook post below answering: "What was the best piece of motivation/advice you've received and how did it help you going forward?"
MORE COMPETITIONS COMING SOON - SUBSCRIBE TO THE NEWSLETTER SO YOU DON'T MISS OUT ON FUTURE COMPETITIONS