Look at moy

A couple of weeks ago I was filmed speaking about my experience having ankylosing spondylitis and using Humira, to be used by AbbVie for educating healthcare providers and patients. I also had a few photos taken by Jess Bovey - here's a couple of my favourites because narcissism.

I'm still here... just not, well, HERE.

Life's gearing up to be busy again! Last week I attended the Fit For Work Summit with Arthritis New Zealand. Professor Stephen Bevan from the UK spoke about his research on musculoskeletal disorders and work... and I spoke about my experience with AS.

Yep, it was pretty damn scary, but I'm so glad I did it. Pretty much prepared it only the night before, and though there was a lot of 'umm's, I'm pretty proud of myself and kind of enjoyed it. There were maybe around 50 people there, which doesn't sound too scary, but after initial introductions around there room there were enough "former MP", "CEO", "doctor"s to make me feel a liiitle bit intimidated. Everyone was super lovely though, and it was a really interesting day. From that I've been invited to another workshop in Auckland later in November. And before that I'm going to the Arthritis NZ open day also in Auckland.

Have been tidying up our website a bit in preparation - so we can actually give interested people the link without an apology - ooh, it's a bit of a work in progress.

Besides all that, I have an idea brewing for my art. And the first problem is finding some space to get creating. Our house is getting just a wee bit small (well, we're accumulating more and more stuff) and while I absolutely don't want to move anytime soon, I'm going to need to either downsize some furniture or find studio space elsewhere.

Next week we're going to a Halloween party to kick of a very busy November. Been working on the best way to do my costume... hopefully it'll turn out well on the day.

Since this blogging thing is clearly just becoming a place for me to throw tidbits for future reference, I won't bother trying to recap the past few weeks (months?) I've skipped over. Highlight of October has probably been going to see Gravity (twice), it is phenomenal! I'd go see it a third time if tickets weren't so absurdly expensive.

Magazine

Thanks Mum and Dad for scanning this for me... I was too forgetful to take it into work. (Click to enlarge).

Super Young Arthritics of New Zealand Facebook page.

Lucky

I'm sure many of you are familiar with Canadian artist Lucky Jackson but in case you are not - she creates the most stunning appliquéd/embroidered artwork, and is currently working on a very impressive 365 project.

I'd admired a portrait Lucky did of Tim Gunn prior to this project for a long time - I think he's hilarious on Project Runway, and really loved the fabrics she'd used - I wanted it on my wall! A couple of months ago I finally decided to enquire about purchasing the piece, and find out what shipping would cost to send it to New Zealand.

When Lucky got back to me after getting a quote, she said she had looked at my blog in the meanwhile and come across this video I did about my disease, ankylosing spondylitis, and the injected medication I take to treat it, Humira.

I was pretty amazed when she revealed in her email that she not only has the very same autoimmune disease as I do, but she is also prescribed Humira.

She went on to say how helpful she had found my video, and that she wanted to gift me the portrait as thanks - needless to say I was blown away by her generousity, and ridiculously excited to receive it! It also happened to be the day before my birthday when I got that email, and while I had a lovely birthday, it was very difficult to top that!

Thrilled.

So this post is mostly to say a huge thank you to Lucky for her generosity, and to encourage those of you who are uninitiated to take a look at her gorgeous work.

What I love about this exchange, almost as much as the artwork itself, is the fact that discovering Lucky shares my struggle with ankylosing spondylitis clearly illustrates what a hidden disease it is - it gives great weight to the 'but you don't look sick!' mission. Lucky's creativity, and particularly productivity, in her 365 project was already so impressive to me as an artist but now - knowing first hand what a hurdle AS can be - I am floored.

Thanks Lucky, for such a wonderful gift, and for giving me permission to share this information about our AS. To say you're an inspiration for me to persevere in my creative endeavours is a massive understatement!

Vlog: Ankylosing Spondylitis & Humira

What can I say, I'm a rambler! Have cut it down as best I could, but if anything doesn't make sense or you have questions - let me know! The blog post I refer to can be found here.

Things that have kept me entertained

Hi, friends! Happy Easter, et cetera. I am feeling pretty good today, thank goodness. And thanks so much for your well wishes. I need to work out how to enable the 'reply' function on comments... I tried following a tutorial but it didn't seem to work for comments in a pop-up window, which is what I prefer... let me know if you know how to get around this, and I'll do some Googling at some stage too. Otherwise might just have to change the comment display setting, because it is a great feature I should use.

So, over the past couple of weeks I've spent a LOT of time alternating between sleeping and trying to prevent boredom. I've watched several movies, but I think I'll do a brief review of each in a separate post.

I watched the six episodes in the second season of Miranda, because I'd only seen season one on NZ TV - such fun. And Tom Ellis is so cute, but in a very charismatic kind of way... in that, the Google images I just looked at make him look like Ted from HIMYM, but he's far more attractive on the show.

I sat with my phone and read through many, many pages of the STFU Parents blog, lol-ing all the way. I am probably just totally slacking on this one since the site recently celebrated its third birthday, but this shit is hilarious. The term "mommyjacking" fills me with glee (and despair, I suppose).

I also read a lot of xoJane articles on my phone - not sure whether there's an even better way of reading it, but their mobile site on Safari is great; just a list of articles and super easy to skip way back in time.

I try and watch Ellen every day even when I'm healthy, but haven't missed an episode the past couple of weeks (although they seem to be playing repeats for the school holidays which is annoying. I hate how television schedules outside of normal school hours change... by all means, put cartoons or whatever on 8-3, but why do we all have to suffer in the evenings, man? Clearly when I'm housebound I get even more passionate about what's on the box). But anyway, I love Ellen - I don't know how anyone could not. And I have most definitely been known to spend several hours watching her hidden camera segments on YouTube.

I've been playing a lot of Draw Something, although it irritates me that despite parting with a couple of dollars for the upgrade, I'm still getting the same words over and over again. It's fun though, those interactive games are so great for super-boredom - always a bunch of games waiting for you or the last resort of starting a new one with a random player. My favourite is definitely Scramble With Friends, which is the Bogglesque, less-popular sibling of Words With Friends. If you want to play me on either my username is NicetiesCoNz haha. I'm not sure how you can find me on Draw Something, because I stupidly signed up through Facebook, so I'm just Alice J, which is obviously no help.

I really don't know what I would have done without YouTube on my phone and our relatively-new unlimited broadband plan during this time. I've discovered so many new favourite channels, but I'm incredibly bad at remembering to subscribe to those I like, which later leads to searches like "facebook rant blonde girl" and such. I mostly watch beauty gurus, but Charlie and I watched a lot of mostly-'90s music videos together on Thursday evening which was fun. And I came across Sophie Madeleine's Pumped Up Kicks cover, which I mainly love because she reminds me of Marie Schrader from Breaking Bad, not gonna lie. But she does have a beautiful voice, too.

I've watched wayyy too many beauty gurus to list, but I'll make special mention of Shannon from Palmerston North who's going to be featured on NZ 20/20 in the coming weeks. Those of you who are local may have to get past her strong accent as I did, but she's pretty entertaining if you enjoy that type of thing, and I'm envious of her on-camera confidence.

Yesterday was Friday, and Charlie moved my computer and art supplies into the bedroom. Which I know is probably super bad feng shui, but we have a small house and too many computers! And mine's the desktop that can pick up wireless, so it makes sense. I also think it might be good for me in terms of creating more artwork, since I won't have the distraction of the TV and the view - though the light isn't as great... but to be honest I do most of my painting at night anyway.

Not that I've picked up a paintbrush in several weeks now, though I have used my sketchbook quite a bit. I started a portrait a few weeks ago and then abandoned it, incomplete, and when I pulled it out of a pile of paper yesterday I discovered a Wallace tooth-shaped hole in the bottom right-hand corner. So either I have to adopt that as my signature, or bin it. Bugger.

Also yesterday I imported most of my CDs into iTunes, which was great because the only other time I attempted to do that was on an ancient triangle-box shaped Mac and each disc took like and hour so I gave up. I thought having my own computer would be handy in stopping those times when Charlie and I both need to use his PC, but it's also really fun personalising it.

Congratulations if you made it to the final paragraphs of this post! I know it's not terribly exciting, but as is my life lately! I'm spending some time with my sister Emily today - we're going to do some shopping and then film a video together, so that should be something interesting to post here! I'm not sure how soon it will be ready though, as editing it will be my first attempt at using this version of iMovie so we'll see how it goes. I also have a video to edit and upload of me getting my Humira shot... but no, I didn't do it myself. I tried. I really wanted to do it. But I had to call Charlie for help in the end, and it stung like a bitch this time too which won't help my confidence for next time.

Anyway, fingers crossed I'll be visiting my parents tomorrow for Easter Sunday, so very much looking forward to that. I hope you all have a great Easter break, and scoff heaps of chocolate.

Don't cripple your future with limps from your past.

I have meant to write this post for a long time, but have just never got around to it until now. Prepare for a long one! As long time readers and people I know in real life may be aware, I have ankylosing spondylitis.

Ankylosing spondylitis is "a form of spondyloarthritis, is a chronic, inflammatory arthritis and autoimmune disease." Yeah, thanks Wikipedia! Don't worry, that doesn't clarify a whole lot for me either!

What does it really mean?

For me, it started one evening when I was around twelve years old. I got a deep, burning ache in my hip that wouldn't go away. It turned into a sharp pain when I moved, and didn't lessen whether I was standing, sitting or lying down. My Mum ended up taking me to the emergency department in the middle of the night, and from what I recall within a couple of days they had tentatively decided I'd dislocated it, and gave me some crutches and painkillers. Over the next few years I had various pains- most frequently in my neck, knees and hips. For a while it was dismissed as growing pains. I can't remember now exactly what age I was when I was given an official diagnosis, but eventually I had a few blood tests and it was decided I had the same arthritic condition as my Mum.

Throughout my teenage years, my symptoms got worse and worse. I was taking around 20 pills per day for most of that time, and they were not making a huge amount of difference. I had monthly blood tests to monitor my inflammation levels, and the effects the various medications were having on me. I was one of those girls with a note to get out of PE class most of the time, and I found that the most frustrating thing was how one day I could be crippled in pain, and the next I could quite easily participate in games. How were those of my peers who didn't know me very well going to understand that? And being an awkward embarrassed teenager, most of the time I didn't really want to go around explaining that I had a disease associated in most people's minds with grandmas. The shame! Pretending to be a lazy 'cbf' kind of PE student proved to be a lot easier than being accused of faking my pain (a rare occurrence, but I do recall it).

In my final year of high school I had a huge amount of sick days, and also had a couple of stints in hospital having intravenous steroid treatments.

Fast forward a couple of years to 2009, and my symptoms had become a daily battle.

I had to sleep flat on my back every night, without a pillow. Every morning I woke up with my back feeling frozen in place. I have metal bars in the headboard of my bed, and getting up in the morning literally meant reaching up with both hands, grabbing the top bar, holding my breath, bracing myself, and hauling myself into a sitting position. My back and hips would usually audibly crack, and I'd be left sitting in bed, trying to catch my breath, and prepare for the next step of actually standing up and making it to the shower.

For at least two years, and probably even before that, I couldn't turn my head more than a few inches in either direction (nowhere near as far as my shoulders) and I couldn't touch my chin to my chest.

The final straw was when I had a 'flare up' in my tail bone, which lasted at least a year. If I sat in a chair for any longer than five minutes, I either needed something to pull myself up with, or assistance from someone. Sitting on the ground was never an option. Pain of any kind is always difficult to describe, but I remember it feeling as though a hammer had smacked me right on the tailbone (glorious mental image)- a horrible, deep, broken, bruised kind of pain. Despite my existing diagnosis, I had x-rays to see whether I had in fact broken it- nope. The possibility of having an operation to remove my coccyx was discussed as a last resort option.

And then... breakthrough! My specialist put me through the application process to get Government funding for a drug called Humira, which was swiftly approved. The drug is administered via injection- an EpiPen. I did my first treatment myself, with a nurse's supervision, and left with a three month supply- one EpiPen every two weeks.

The next morning after that first injection, I woke up and literally jumped out of bed- it worked in less than 24 hours for me. Being a total girl, I promptly burst into tears and called my Mum- it was a fucking amazing day.

I have been completely pain-free for over a year now, and have had no serious side effects to the drug. The drug itself is absolutely no picnic- it's an incredibly sharp sting, but it only lasts ten seconds. I haven't been able to bring myself to self inject with the EpiPen since the first time with the nurse- Charlie (or occasionally my Mum or friend Sarah) gives me the shot in my thigh once every two weeks, with me clenching my teeth and being a drama queen. But it is so sooo worth it, I can't even begin to tell you how much my life has improved.

I still have the disease, and the damage already suffered by my joints will not go away. But my pain is gone, I can twist my neck and look behind me without turning my whole body around, I can sit on my office chair at work for eight hours a day and still be able to function afterwards, and I can sleep on my stomach again- a luxury I didn't know I had until it was gone!

I don't know what will happen in the future- for now I'm just hoping Government funding for it will continue forever really. The drug costs around NZ$2000 per pen and it's really sad knowing American people on Facebook who are having to fund raise to try and get this drug which I can get so severely subsidised for just a few dollars. I feel extremely lucky.

Join the Super Young Arthritics of Wellington Facebook group here. Anyone in the world is welcome to join, but for Wellingtonians we meet up periodically for beers.

Arthritis New Zealand Annual Appeal rant

Edit: According to Google Analytics I've had a few hits from people Googling "arthritis" "New Zealand" etc. If you wish to join our Wellington-based Facebook group you can do so here. All welcome.


You may or may not be aware of the fact that I have ankylosing spondylitis; an autoimmune disease with a ridiculously long-winded, tongue-twister of a name, and a depressing list of symptoms and outlooks. AS is a form of arthritis that mainly affects the spine. I was diagnosed a number of years ago now, and had my first symptoms of it around age 12.

At some stage I will definitely write a post on my personal experiences as a juvenile arthritic, but today I'm just writing my opinion on this TV advertisement for Arthritis New Zealand, and their annual appeal week which finishes tomorrow.

This year is the first time I'd seen it, though according to the YouTube upload it was also used last year. A trio of NZ "celebrities" fumble around in bright orange, over sized gloves, attempting to demonstrate the restrictions arthritis causes its sufferers.

Firstly, the elements of this ad that I commend are as follows:

• The use of locally recognisable celebrities
• Featuring Geraldine Brophy, who has arthritis herself
• Having a TV advertisement in the first place

However, that's pretty much where my praise ends.

I knew what arthritis was even as a small child, even though I wasn't aware that my own Mum had it (I'm talking primary school age). I recall the term being commonly used throughout my early years among my peers, "Don't crack your knuckles, you'll get arthritis!" We may not have known the finer details of the symptoms or causes of the disease, but we were all perfectly aware that arthritis was pain inside the joints of a person's body.

I personally don't think that the general population needs any eduction as to what arthritis is, on surface value, which is all this ad really covers. I don't imagine there's anyone in the country who doesn't know of somebody affected by it, and therefore knows the basics of what it is. However for the majority of people it will be an elderly relative with osteoarthritis, which is incredibly common, affecting almost all of the elderly population; a progressive breakdown of the joints. Elderly are already considered old and slow, and if I didn't have my own experiences with a different type of the disease, then I imagine I'd be quite oblivious to the degree of pain these elderly people are suffering from.

I don't like the advertisement's focus on the physical restrictions of arthritis, and the emphasis on the hands. This point is all very well outlined in Helen's blog post here:

"For one thing, these ads have absolutely no mention of pain. Personally, I have almost full function of my hands, but that doesn't mean that they are not extremely painful. Yes, arthritis does sometimes make my hands fumbly. There are times when I can't do up zips or find using a knife and fork difficult but this is a minor irritation compared to the long list of other symptoms and difficulties that come with the disease..."

"Then of course there is the pain and the things that go along with constantly being in pain. Lack of sleep, inability to concentrate, general exhaustion and floods of emotion..."

"Too many people already think that arthritis is just something you get in your hands..."

Lastly, I am irritated by the missed opportunity that could have been provided by the young celebrities. Where was the "I'm Drew Neemia, and arthritis affects people MY AGE"?

I realise there are two separate issues that Arthritis New Zealand supposedly advocate: the plea for support in the form of donations, and the plea for support in the form of public awareness and understanding. I just absolutely believe that this campaign could have achieved both to a greater degree if more emphasis was put on the how and the who, rather than just the what.

Day 9 of 30/Whinging

This past week I've had a few things to be proud of. Obviously getting Wallace, and feeling like I rescued him from a very bizarre living arrangement. Going to Sarah's school to help with backdrops. Being a bit more frugal with my money than usual. Finally buying Rufus tickets (well, Sarah had to help me out there, since I couldn't get the credit card to work online...!) And I think I've had a pretty productive week at work too.

On a negative note, I've had a couple of minor (in comparison to the benefits) side effects from Humira. The most annoying of which is that my hands have gone insanely scaly, dry and cracked. I put moisturisers and creams on them all day long, and they still split. My hands were in better condition when I was washing dishes in a cafe for hours on end. Still, it is a minor complaint! My next shot is tomorrow, in my thigh, and I'm sure Charlie's looking forward to administering it! I still can't bring myself to. My last one, two weeks ago, was in my stomach and left a bruise that's STILL there! The EpiPen shoots pretty damn hard. Sigh! I'm not too bothered really, I just like having an outlet for complaints!

Tonight I'm going to a party wearing a moustache. Should be good!

Have had the most disappointing weekend thus far! It's Saturday night and I'm at home watching The Stepford Wives on TV2 and contantly squeezing my neck muscles; I woke up unable to turn my head to the right. So irritating! I had to cancel my plans to go to the party of one of my best friends, and I know she'll be disappointed which is totally understandable. I feel terrible, especially after people cancelled on my 21st I hate letting people down.

I haven't had neck pain since I started Humira, and I forgot how incredibly restricting it is to be unable to move your neck! I'm sure it's just a pulled muscle, but it feels pretty similar to my AS symptoms. I have plans with my friend Sophie tomorrow, so I absolutely have to improve over night! So excited to see her, she moved to Auckland over a year ago now and I really miss her.

I have managed to get a lot more work done on my drawing, in brief sittings. I guess sitting with my head bend at my desk probably wont help, but I'm so so eager to finish it! I can't decide whether to add it to my Rufus drawing and store them away for a future exhibition or whether to attempt to sell it on Trade Me. I've spent SO many hours on it! Pricing will be very difficult to work out. I guess I'll just stick to selling little watercolours on Trade Me though, it seems a shame not to exhibit one of the best pieces I've ever done.

This movie is so retarded. I saw it when it first came out. But man the Wives look incredible. I want all of their dresses! And I love Glenn Close.

Here's hoping Sunday trumps Saturday!