Why I decided to become a 'calendar girl'

Donna Joosten enjoyed her first professional photographic shoot for the Vintage Calendar Girls project..
Donna Joosten enjoyed her first professional photographic shoot for the Vintage Calendar Girls project.. The Studio Photography

MY HUSBAND became involved with the Vintage Calendar Girls project long before I did.

He was their event DJ from the outset, four years ago, but it wasn't until I was diagnosed with an auto-immune disease that I thought the time was right for me to step in front of the camera.

When I did, I felt extremely awkward. I always have when I've been in front of the camera.

Growing up, I was a musician and played in bands, so I was one of many and I was comfortable on stage as one of many. Whenever the spotlight is on me, I just turn into this awkward dork.

But I decided to give into (calendar founder) Misty's bugging as I thought it would be a good way to raise some awareness for Ankylosing Spondylitis, an auto-immune condition that affects your spine.

It's nothing like the rare chordoma that Misty's husband, Rob, is going through, but I have a kind of appreciation for what it is that he is going through.

This biggest thing for me was getting a diagnosis for what I have. It is most common in men between the ages of 17 and 35.

Since I'm a 36-year-old female, I really didn't fit the mould.

My diagnosis actually started through an eye doctor, because I'd been to see them for uveitis, which is inflammation inside the eye. The specialist wanted some answers as to why I was suffering from this and found I had the HLAP27 gene, which is an indicator of AS.



Donna Joosten enjoyed her first professional photographic shoot for the Vintage Calendar Girls project..
Donna Joosten enjoyed her first professional photographic shoot for the Vintage Calendar Girls project.. The Studio Photography

They then did some x-rays of my joints and saw that my pelvis was fusing, which is another indicator.

This is essentially what AS is - inflammation in your body that causes your immune system to go into overdrive and fuse your joints over. In really bad cases, the joints between your vertebrae can grow over, but I don't have that.

Even still, people who have AS find it very difficult to do a lot of things. I was diagnosed in 2015, when I was in my third year of university studying occupational therapy and for me, sitting at a computer for more than 10 minutes at a time was super hard.

When the rheumatologist first said this is what you have, I was in denial straight away.

But then I thought back to when I had my first daughter 11 years ago. I couldn't stand for five days, couldn't bath her and had a lot of trouble getting her in and out of a cot.

Then I thought even further back, to when I was a checkout chick at Woollies and would get such a sore back after each shift. I just thought it was because I was standing still, but the AS was affecting me even then.

The saving thing for me, and what helped me emerge from my denial phase, was meeting a lady in her 70s during my placement for university. She had AS but was hospitalised because she'd fallen off a roof.

I took the opportunity to ask her how she managed it.


Some of the other women who posed for the Vintage Calendar Girls calendar.
Some of the other women who posed for the Vintage Calendar Girls calendar. The Studio Photography

She was diagnosed 45 years ago, so around the same age as me and she said "just keep moving, take your medication and don't let it get you down".

It really helped me to look at things more positively. At the time, I was going through my last year of uni with poorly controlled AS and at the end of each semester, I would have what they call a flare, where the inflammation in your body just shoots up and I would end up in bed, not moving.

Ironically, this is the worst thing you can do, because your joints seize up even more.

I nearly gave up studying and working so many times, but I knew I had to prove to my two daughters that you've got to stick with your goals and see them through.

My girls and my husband Scott have been just amazing. They really accommodate me and respect that there are some things I just can't do.

If they lean on me funny, it can hurt, and I can't do things like go on the rides at Dreamworld with them anymore - it's just too much for my body.

Carrying heavy things is quite hard and when I walk long distances the muscles in the base of my feet get inflamed and it feels like I'm walking on fire.

I have had to learn to plan my energy levels and I'm a big fan of the Spoon Theory, where you have seven spoons of energy to spend each day. You can then plan your day depending on how many spoons you have left.

Depending how demanding it is, and how I'm feeling, a spoon could be doing the dishes and stacking them away.

For some AS sufferers, a spoon could be driving to the supermarket. Another spoon to complete the shopping, and another spoon to drive home and put it all away.

I am pretty good about that now, so I work four days a week as I need that one day to just take stock.

My goal is to get off the biological injections, which I was prescribed in July. I have to administer them myself with a epi-pen type device in my thigh once a month.

Although they are called biologicals, it is an intense treatment that is similar to cancer treatments designed to stop tumours from growing. I have monthly blood tests to make sure the treatment is not having negative impacts on other parts of my body.

I also have to be more aware than others when it comes to my immune system, which is compromised by the medication I take. They effectively turn off your immune system, but the idea is that this will stop the body attacking itself and stop that fusion of the joints.

Luckily, I work in an outpatient facility where the majority of the people I see are healthy. But on the occasions when they do see me with a virus, I have to be super cautious and constantly wash my hands.

I do have to stay up to date with immunisations, and I am obsessed with handwashing. The kids and my husband also know not to kiss and cuddle me when they are unwell.

AS is actually a lot more common that people realise. Arthritis Australia says two per cent of Australians suffer from AS. It is commonly undiagnosed as people think they simply have a bad back.

But, as it did for me, it can also have effects on your eyes and your ribs can also fuse onto your spine, it also attacks your organs. It really doesn't discriminate.

I felt quite alone in all of this, until I found the Ankylosing Spondylitis Sunshine Coast group on Facebook. There are more than 150 members and they just get it.

They are I the same position as me. As much as other people try and understand what you are going through, they don't get it.

It's like me saying I've got a toddler who is driving me nuts and someone else saying 'Just wait until they are four...".

Through the group, I discovered some high profile people that have this disease, including the lead singer of Imagine Dragons, a guy on Ninja Warrior had it, Australian cricketer Michael Slater has it, and Mick Mars, the Motley Crue guitarist, has it.

All of these people have inspired me because they live very busy and mobile lives.

I'd encourage anyone who has experienced back pain that can't be explained to do some research and ask for blood tests and x-rays to at the very least rule AS out.

For me, the keys to managing it are to get active and have a lot of movement. I have a specific starch-free diet that I follow, I have regular physio and chiro and swimming is amazing because it stretched out the spine and the water takes all of the gravity out of it.

It was such an amazing experience being a Vintage Calendar Girl, and having my hair and make-up done was a real treat.

Scott and I had a small wedding, so this was the first time I have ever had professional photography done.

Meeting other calendar girls, some of whom have equally as challenging health battles to get through, has been inspiring and I have greatly enjoyed the experience.

Topics:  fundraising campaign my story photography

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