My sister Emily graduated from Massey University today! My aunt has the photos on her camera, so I'll post those at a later date, just a couple from my phone for now. Dad's face in that last photobooth picture is cracking me up. It was a beauuutiful sunny day, this weather is so ridiculous and amazing for May. The graduation ceremony itself was actually really enjoyable, I suspect it wasn't as long as those some of my friends have attended because it didn't drag on at all. Emily looked beautiful as always, and it was lovely celebrating with the family. Super proud of my little sister!
I ended up coming back to Wellington after dinner tonight rather than going to my parents' house. My birthday on Friday is going to be pretty busy with a couple of medical appointments (lucky me!) and just celebrating with Charlie, so I think I'll do some big time cleaning around home tomorrow and hopefully some drawing once my workspace is tidy again... Busy weekend ahead with another Arthritis New Zealand event on Saturday (I'm speaking on a panel) and a family lunch on Sunday. May is mad.
I'm being really common and listening to this song a lot lately. Those of you overseas may have already heard it after it got some Buzzfeed attention. To be honest I didn't see what the fuss was about when I first listened. And something about her face reminds me of someone from my past I have no good feelings towards. But after that one listen I had it stuck in my head and went crawling back to it again after a couple of days of repeating 'royyyals... ruuuler' under my breath. I love her hair in this video so much. Super styled I guess, but it still kinda sorta makes me want to stop damaging my hair with straighteners and let the curls go for it... When I was at high school I used to wear it curly a lot, and it formed such nice ringlets. It's so damaged and dry now that no matter how many treatments I try, the curls just frizz apart. This post is going somewhere really boring so just watch the damn video and goodnight. Haha.
I've just returned from a super inspiring weekend in Auckland, attending an advocacy training workshop run by Arthritis New Zealand. Prepare for a lengthy post!
I was aware after I started Humira and almost all of my pain symptoms stopped that I lost a lot of enthusiasm for attending our Super Young Arthritics of New Zealand support group meetings. I felt like people who were still in constant pain wouldn't be able to relate to me anymore, and being able to move around freely while others in the group were often unable to walk unaided made me feel almost like I'd be rubbing it in their face. I've slowly been realising that's a stupid way to think, and this weekend has really brought home how much I can help and that I can probably do even more for people than I could have when my own condition was at its worst.
A few of the other people there also have ankylosing spondylitis, and for one of them it's quite evident that they are unable to move their neck. I initially sat there feeling quite emotional, thinking that if it wasn't for how successful Humira has been in treating my condition over the past few years I could easily have ended up the same way. It was pretty incredible that when I said that to Sarah later in the day she said 'bro, that's exactly how you were before Humira'. I knew my movement had been limited but to hear that it had been so visible was actually pretty shocking to me.
We learnt a lot of skills around advocating for individuals; assisting people in coming up with their own plans for solving problems, getting effective treatment etc. It was interesting to learn about the distinction between support and advocacy too. For a lot of people I've met through SYA of NZ, they don't necessarily need someone to be working through their issues with them, but just want an emotional outlet, someone to tell their story to. For others, they do need that advocacy side of things. Something that stuck out for me during discussions was that advocating is 'helping people to find their voice rather than being their voice'.
We had MP Peseta Sam Lotu-Iiga speak to us yesterday about how to get local MPs' attention, and the kinds of things that will impact politicians and make them pay attention to your cause. I have an o‐kay knowledge of that side of things, but it was mostly inspiring for me to consider ways to really getting involved and take action, rather than just sitting around thinking about issues. Sarah and I had a brief chat with him afterwards and he's a really cool guy. Very engaged with social media and seemed really interested in our group.
Today we had media commentator/columnist Chris Trotter speak about a similar thing but from a media perspective which I was a lot more familiar with. One of the most important things I took away from today had nothing to do with training, but discussing Arthritis New Zealand's ad campaigns. There is this one I've embedded below that has been running on national TV for a while now about ankylosing spondylitis.
For me personally and for several other young people in our group, it seemed to be a very inaccurate portrayal of the reality of AS for many people; glossing over the months or years of experimentation with many different treatments before hopefully finding one that does work effectively to treat symptoms ideally without nasty side effects. I definitely felt like the ad diminished the harsh reality of living with chronic pain ‐ go see a doctor for some medicine, you'll feel good as new! And as someone who had to go through almost a decade from the first pain symptoms to finding an effective treatment, it made me feel like the struggle to make the general population understand how serious it can be at its worst would be even more difficult ‐ oh yeah, like that active race car driver on TV?
The reality is something we probably should have worked out for ourselves but hadn't really considered; that the funding for that campaign was from drug companies, and obviously they don't want people to know that their products are not a quick fix (I should point out that for all my ravings about Humira, I know quite a few people now who have tried or currently use it, and I'm the only one who found it totally effective literally overnight. It does happen, but for the people I know personally it's either been a gradual improvement or has not worked for them at all.) From Arthritis NZ's perspective, it greatly increased the number of people going to their GPs and getting referrals to rheumatologists which is fantastic. I just still feel that harder hitting campaigns would still encourage people to seek medical treatment. I wouldn't want it to be scaring the shit out people with worst case scenarios, but just convey how serious it can be and the huge impact it can have on people of all ages. It was great to hear acknowledgement that other appeal campaigns have been "too soft" and will hopefully improve.
I've been thinking a lot about the fine line between staying PC when raising awareness about arthritis (there was talk about not using the word 'suffering' for example) or not downplaying the strength of people who have the condition, and making people realise how serious it is. As Chris Trotter said (paraphrasing), people will think 'oh, they're not suffering? Well great, they're fine then!'
I've certainly been given a lot to think about, and I spent last night in our hotel room with Sarah, Keryn and Lauren drinking cider and brainstorming some pretty exciting ideas (I also haven't laughed so hard in ages). In two weeks I'm going to be on a panel with Sarah, Keryn and a few other young Wellingtonians, speaking to teenagers with arthritis. I had been looking forward to it, but am pretty excited for it now. I'm hopeful I can offer some kind of valuable advice for someone there, but also so keen to hear their ideas and needs. It's amazing how much has changed in terms of communication since I was diagnosed mid teens. There's so much work that needs to be done in getting diagnosed people aware of the support available but with Facebook especially it's a hell of a lot easier than when I was 15.
Slightly worse for wear this morning.
Anyway, we shot a few brief interviews with speakers so I'm going to start editing them while its still early. I have a really busy week at work coming up with our national conference so I better get as much sleep as I can.
I'm going to really try and get back on top of blogging over the next couple of months, because there's so much coming up!
I spent today with my friend Sarah who's visiting from Tauranga, and we toured a few kid-friendly places in the city. I was very hopeful we'd get to go to the zoo, but unfortunately the rain didn't clear until mid afternoon so we ran out of time.
In May I'm going to Auckland for a weekend to attend an arthritis advocacy training workshop. Not really sure what to expect, but it should be a great experience. And hello, free flights?
After that weekend, my sister's graduating from University which is pretty exciting. Well, she's been out of uni and working as a nurse for a few months now but I guess it's all about the piece of paper and photo ops? Never been to a graduation before.
A couple of days after that it's my 24th birthday, and a couple of days after that I'm going to be on a discussion panel at an event for teenagers with arthritis. Hoping it'll be a pretty small group of people we're talking to, but either way it'll be good to get out of my comfort zone.
We're also having a couple of friends to stay from out of town in May and then in June, as well as a whole bunch of family and friends' birthdays.
Working on my art is definitely being pushed aside a bit lately. I've had a charcoal drawing on the go for a couple of weeks now, only putting in an hour or so here and there which is really slack of me. I posted a wee progress shot a little while ago here.
Otherwise, work and home is pretty much as ush, all's well. More later... later.
Normally "proud to be a Kiwi" comments make my face crumple into a visual definition of 'cringe'. But this evening it's totally appropriate and appreciated. Our Parliament passed the final reading of a bill to amend the Marriage Act allowing same-sex couples to marry. 77 votes for, 44 against. Wonderful!
I'm really tired, and trying to watch the first My Kitchen Rules finale decider before I fall asleep in my chair, as I type this (boy do politicians faff about). But I just had to type a teeny tiny possibly incoherent acknowledgement of what is a very important day for many of my fellow Kiwis, and really the country as a whole. There's a looong way to go judging by so many views I've read from those who were opposed, but it's a great step towards a country I can really be proud of.
I have a bunch of films I watched in my late teens during the 'I'm so alternative' phase that blew my mind and I still adore. But the movie I love and can happily watch over and over is Inglourious Basterds. Favorite scene from that movie?
The basement pub scene. My first 'zomg who is Michael Fassbender, I die' moment.
Favorite actors/actresses?
Michael Fassbender, Kevin Spacey, Abbie Cornish. Most annoying actor/actress?
Will Ferrell Best director?
Don't pay much attention to directors' names anymore despite my admiration and respect for them, but the two favourites I know are Quentin Tarantino and David Mackenzie. Favorite guilty pleasure film?
Sooo many, but Little Black Book, How to Lose a Guy in 10 Days, and What Women Want are probably the top three.
Favorite tear jerker?
Atonement. I went to see it alone, hadn't read the book, and cried like a baby. Then made two of my friends come to see it with me so I had someone to talk to about it. Character from a movie that scared you the most?
The only one that springs to mind is the doctor in the Human Centipede. But more sickening than scary really. Movie you hate everyone loves?
Anchorman. I'm sorry, I just can't. I really did try several times. Favorite movie duo?
Wallace and Gromit. And Candy and Dan in Candy, despite... everything.
Favorite animated movie?
Wallace and Gromit in the Wrong Trousers and Wallace and Gromit in a Close Shave. What's the first movie you remember watching in theaters?
I know The Lion King is the first film I saw at the movies, but the first one I really remember is The Hunchback of Notre Dame. My Dad told us we were going to a church called Notre Dame, and my sister and I were sooo pissed. We believed we were going to church right up until we were dragged through the cinema doors. If you could go back in time and marry actor/actress from back when who would it be?
I think the only way I will happily continue with this blog is to get rid of comments altogether. Blogger's spam filter failure is driving me effing crazy. I know I could embed another commenting system on here, but I can't even really be bothered with that. If you want to contact me, please do so through email, Twitter, or Facebook.
I'll be back once this bloggy mess has been cleaned up. Hope you're all well!
Surprise, surprise, I've been slacking on my blog again. Sorry! Life hasn't been extraordinarily busy or anything, but the weather has been totally summer-appropriate for once, so I've been spending as little time in front of a computer as possible.
That doesn't mean I've been skipping my favourite TV shows though... Still watching Girls, though every character except Shoshanna, Ray, and sometimes Adam, annoys the crap out of me. If it wasn't set in New York I definitely would have tuned out for good.
I also bought a book last week, so have been reading that when I can. It's 11/22/63 by Stephen King, and I'm about 1/4 of the way through it. So far, so good. Will try and remember to write a review once I finish it.
