Saturday, June 16, 2018

Rawr

Archie chose to spend his birthday @qldmuseum .
.
.
#trex #brisbane #brisbaneanyday #museum #qldmuseum #myqueenslander #myson #parentingwithrheumatoidarthritis
QLD museum
My family does not adhere to gender norms very well. And sometimes it hurts. My son is very attached to his Daddy, like a lot of children get very attached to Mum. "Only Mum will do."
Except it's not Mum. It's Dad. I'm currently lying in bed at midnight, feeling rejected. As only Dad will do. 

Alas, Ri is out tonight with some mates, something that he basically never gets to do. So it's just me and the kids for the evening. Everything went fine until we reached the end of story time and it was time to go to sleep. My almost-seven-year old said goodnight and immediately fell asleep. My son, my four year old, my Arch, begged me to sleep next to him. When I snuggled in next to him he started screaming for me to get out. Only Daddy would do. And my heart still hurts. 
Arch ended up coming to my room, apologising and asking me to come back and lie next to him while he fell asleep. After begging me for Daddy, one more time.
I've always taken great pride in Ri's parenting, he is amazing with our children. And me feeling insufficient as a Mum has nothing to do with him being amazing. 
I'm feeling tired and anxious in myself, it was hard not to burst into tears and let the four year old know in no uncertain terms how he hurt my feelings. But I honestly don't think it's Archie. 
So I swallowed my pride, put him to sleep... and wrote a blog post about it instead. 
 

Sunday, June 10, 2018

Long service

A honeymoon flashback .
.
.
#joneshoneymoon2010 #rome #sundayinRome #colosseum #italy #travel #iamthefaceofarthritis
Me in Rome September 2010
 In just over a month I'm going on long service leave. And in a twist  that is surprising for me/any one who knows me, we're not using that time to travel. My husband and I have been to around 30 countries together and the kids have been to 7. I'm trying to keep Immy's country count above her age. 
I had thought that my long service would be used to visit Ri's father in France, but I think Archie is a year or two away from being ready to go to Europe (and not make our lives miserable). 
I know that I don't have to take my leave, but I feel as though I'm at a turning point and I need to focus on my research for a few months.  Will I miss my clinical role too much? Or can I leave it behind? I honestly don't know. 
I'm just recovering from another episode of imposter syndrome, I worry that if I leave my clinical job, that all I'll have left is that feeling that I'm in over my head. On the other side of that coin, for what equates to one day a week of pay, my clinical job takes quite a bit of energy (I find myself thinking about my patients a lot). 
I've got too many balls in the air and something has got to give. So I'm going on leave. 

Sunday, June 3, 2018

Pain and fear

My left shoulder hurts.
It hurts a lot.
It hurts so much that I've decided to stay home from my sister in law's birthday dinner.
Not something that I do lightly.

Having had RA since 1987 I am not new to pain. But I'm new to staying home when it's getting too much and allowing myself time to rest.

I've started looking into shoulder replacements. I've had my hips and knees replaced in 2001 and 2003 respectively. I've always been of the opinion that hip and knee replacements are better quality than shoulder replacements.
And even if the technology has improved, the thought of getting a replacement now is different to when I was looking at getting my hips replaced.
I was sixteen when I got my hips replaced and I knew everything would work out for the best. I didn't consider the things that could go wrong. I literally blocked my ears singing *lalalalalala* when my surgeon listed the risks prior to the surgery. My logic was if I didn't know what could happen then it wouldn't. Flawless logic, I know.
But now I'm afraid. What if something happens? What if I'm left with nerve damage?
What if I got an infection and died? Is it worth leaving my kids behind?
I've gone from one extreme to another.

So the next step will probably be to get another direct into the joint injection.

Sunday, May 27, 2018

Some of my favourite quotes...

I think my work space/s are missing quotes. Inspirational quotes to motivate me during my monthly freak outs. The problem is I find a lot of quotes cheesy to too serious. Come with me on an adventure on google to find a nice quote...


Quote one: I like this one as my mother is always going on about phones...

“I've come up with a set of rules that describe our reactions to technologies:
1. Anything that is in the world when you’re born is normal and ordinary and is just a natural part of the way the world works.
2. Anything that's invented between when you’re fifteen and thirty-five is new and exciting and revolutionary and you can probably get a career in it.
3. Anything invented after you're thirty-five is against the natural order of things.”

Quote two: From the book Goodnight stories for Rebel girls. I just love cake  too. 
❤️ .
.
.
#quote#cakelovers#juliachild#goodnightstoriesforrebelgirls#bedtime#readeveryday#readingismagic#parenthood 

Quote three: one of my favourites because her words are being remembered...
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” 
― Maya Angelou

Quote four: this is just true 
We accept the love we think we deserve.” 
― Stephen ChboskyThe Perks of Being a Wallflower


Quote five: oh I think I like this one

People often say that motivation doesn’t last. Well, neither does bathing – that’s why we recommend it daily.-Zig Ziglar

Saturday, May 26, 2018

PhD parent: guilt

Image result for mrstorijones19
Mother's guilt
To be honest it isn't something that I experienced before I started my research. I started when my daughter was four and my son was two. I've always felt as though I am doing my best to be the best mum that I can be. Sure we get a lot of (much appreciated) help from their grandparents, but I've always justified that as being good for the kids and our parents. 
But this year, I don't feel as though I am putting in sufficient mum hours. I can often be found on a laptop, distracted. I find it easier to assess some participants on the weekends. Some weeks I feel like I barely get to have a conversation with my kids that isn't "have you done your homework?" "where are your shoes" "brush your hair" "what do you want for dinner?".
This is my dream and when it is going well it seems like it is worth it. But doing those bad weeks I feel like I am wasting their childhoods. They're only little once, after all.

Every year I try to make sure that we go on holidays for at least two weeks, to spend time together as a family. And I try to get to school events when I can. But I'm not exactly a part of the P&C. 

I'm trying. 


When I was my daughters age I was having a very rough time at school. In primary school I encountered so many bullies. None were children. One day I’ll tell the story of being the kid in the wheelchair. But not today. Today I’m happy because the school my baby girl attends is wonderful and she’s just about the happiest kid you’ll meet. #JIA #rheumatoidarthritis #parentingwithrheumatoidarthritis #mytwo #aussiekids #ascot #galaday

Friday, May 25, 2018

Writing every day

Look at the cute puppy - our cavoodle Chester
"Just know everything." - My high school chemistry teacher. 
At this point in time, the easiest option would be to just sit down and read for a month straight - or as long as it takes to just know everything about what I am doing.
Being a part time PhD student is really taking it's toll on me this year. I'm finding it harder to stay on track, keep things in my mind and switch between my clinical job and research. Not to mention parenting and dealing with my rheumatoid arthritis and all the joys that come with that.

I've been recruiting this year, and I like to think that I'm good with people, but I have to say that the drop out rate this month has been beyond disheartening. I've had some highs and lows this year and the unpredictable nature of the next low keeps me up some nights.
I've made some big changes to my project in the last month. I've spoken to another statistician who has encouraged me to frame my research project as an exploratory study. Instead of testing a hypothesis I am developing one. Which makes sense to me.
With every month that passes I am learning more. Sometimes growing in confidence, sometimes being swallowed by anxiety. Sometimes I hear myself saying something and think *ooo that sounded clever*, other times I am a deer in the headlights, red hot with embarrassment and positive I am only capable of speaking nonsense.

I'm applying to take long service from my clinical job to focus on my research. I'm not sure what will happen next. 

Monday, April 9, 2018

Published

Aphasia and reperfusion therapies in hyper-acute settings: A scoping review.

Has been published. It can be found at  2018 Apr 3:1-13. doi: 10.1080/17549507.2018.1448894.

I'm excited. I'm proud. I'm nervous. I'm frustrated, because I always think I could have done a better job. 
There are at least four more articles to come for my thesis alone. 
I'm excited. I'm nervous. 

Monday, March 26, 2018

This year in travel

Image result for cairns to green island time
image from Big Cat Green Island Reef Cruises

After our trip to Singapore and Hong Kong at the end of 2017 we decided that this year we would not leave Australia. Hoping to save up for a trip to Europe to visit Rhy's Dad next year. A trip we keep saying will be "next year" but we're waiting for our youngest to be ready for a busy and long holiday. I've so many places I want them to see, and I have a few places I'd like to add to my country count. 
Usually when we holiday at home we go to Adelaide, Melbourne or Sydney - all places that family and dear friends call home. But this year we are heading north and I am so excited. 
We are planning to go back to where I was born, a place I haven't been back to since I was 6 or 7. Since I was my daughters age. Darwin. We're spending a week in Darwin with my mum. She's going to give us a little bit of a tour of my childhood. And we are going to spread my grandparents ashes. My Grandma and Pa both died in the 1990s, they died in Melbourne but both said they'd like their ashes scattered in Darwin. I only heard this three or four years ago. I was a bit shocked to find my grandparents had moved around the country with us. In little containers in the garage. I want to see their final wishes granted. The last of them to pass away - Pa - died when I was 11, so I never really did anything for them while they were alive. Other than bring them that unique grandparent joy only grandchildren can bring. 
After Darwin we are heading over to Cairns to visit some friends who moved to Cairns in January. We're spending a few nights on Green Island (the pic above) and I cannot wait to take Imogen snorkeling now that she is a much stronger swimmer. 

So this is what I am looking forward to this winter.  
 

Sunday, March 25, 2018

2018

Image result for 2018Welcome to 2018. Ok, welcome the the 85th day of 2018. I'm clearly doing a brilliant job at writing everyday.  This year is going well, so far. We moved into our new home at the start of the year, my health is back on track and my PhD is steadily chugging along. I'm deep into the recruitment phase. It's been an interesting learning curve. Most people are so polite and don't want to say no straight away. Being "part-time"  has also added another level of difficulty to recruitment, initially I thought it would just be an advantage as I would have time overall to recruit, but I have less time in the week. Let's see if I can come back tomorrow and expand on the other things I've been up to,
Cheers.

Tuesday, December 12, 2017

Pausing recruitment

We're off to Singapore tomorrow and I am feeling a bit anxious about pausing recruitment, I felt like I was just getting on a roll with my contacts and knowing where to be and who to ask to find participants.
I stopped earlier than planned because my husband and children were in a car accident on Saturday (they are fine, just some grazes and a little shaken up) and my car was wrecked.

It's the only car that I feel comfortable driving, so the loss of my car resulted in drawing my 2017 recruitment to an end 3-4 days early.
We also have to move out of the airBnB tomorrow and our apartment is not quite ready, so we've got to distribute our stuff all over the northern suburbs of Brisbane before we leave.

We need this holiday. Our family has had a stressful year.

We have some good news! Our house has settled and the keys have been handed over.

I'll head over to our travel blog while we are overseas and post about our trip there. 

Friday, December 1, 2017

Preparing for our holiday

I picked up my passport today, it's not long until we're overseas for a couple of weeks, for a short but much needed holiday. I'm trying to organise my thoughts about where we should go. Travelling with a three year old and a six year old, I don't want to push them too hard, here are some of the places on my Singapore to-do list.

Singapore 

S.E.A Aquarium 
Opens at 10am open until 7pm, appears to be open 7 days a week. ?Monday.
$30/adult 

Universal Studios 
Opening hours 10am-9pm
?fireworks at 9:30pm. 

Adventure Cove Waterpark 
around $38 
Or was it wild wild wet?

Gardens by the Bay 
?Christmas Wonderland 

Singapore zoo 
8:30-6:00pm 
?breakfast with orangutans $232.84 

Santa in Singapore 
The Winter Wonderland at Marina Bay Sands wouldn't be complete without Santa himself. So, don't miss out on meeting him and make sure you've been extra good this year to make it onto Santa's nice list! He’ll be at MBS from 15 November until 23 December everyday from 5:00pm to 9:00pm and at 12:00pm to 4:00pm on weekends and Christmas Eve and Christmas Day.
Tanglin mall: Take a picture with Santa Claus in a magical Christmas setting! The photos will be printed instantly and presented in a beautiful Christmas folder. Don't miss to meet Santa from 22nd of November to 23rd of December, 11:00am to 7:00pm and on the Christmas Eve from 11:00am to 4:00pm.
At the airport? If your family is up for an adventure, then make your way to Changi Airport Terminal 3, where you can experience a magical Christmas at Bikini Bottom! Meet up with SpongeBob SquarePants and write your Christmas wish and receive a special gift!

We also have a week in Hong Kong!

2018 family holiday part one: Darwin

Much to my distress I still had the flu all the way up until when we went to Darwin. I didn't get to go out for dinner wit...