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Adventures of a Girl Reporter, Ankylosing Spondylitis, Australia, Observations

Ankyspondydoodah… doodah… doodah

A Hat Tip to everyone facing a health challenge. Sometimes it slows us down and forces us to take a slightly different direction, but the journey continues. 

I learned a couple of things this week which blew my plans for the latest post out of the water.

First I came across a hashtag for Ankylosing Spondylitis, which indicated there was a whole Month dedicated to the condition which has played a huge part in the establishment of my blog.

Further investigation suggests that Ankylosing Spondydoodah Month was in April LAST year, so I am fashionably late once again.

The other thing I learned was that AS continues to lay waste to the best laid plans.

I had intended to write a follow-up to the Keys to the Lodge, a post I wrote back in January as an attempt to assess Gillard’s political prospects for the year ahead.

Instead, I found myself lying in a darkened room hoping against all hope that the pain in my left eye wasn’t the start of an Iritis flare-up, right on the Easter long weekend.

So far, so good Gentle Reader, but now that I’m back at my keyboard my thoughts are turning not to the Canberra Punch and Judy Show but the impact of AS on my writing.

This time last year, when it really was Anky Spondoodle Month, I was in dreadful shape.

I first experienced symptoms at 17 and, while it’s unpleasant, I’m lucky that AS had never given me any great dramas through my life. Except for people really close to me, I’ve always managed to keep it pretty much to myself.

I landed a dream job a couple of years ago, filled with creativity, excitement and unpredictable working hours. My daughters had hit adulthood and for the first time in my career I could really go for it.

The AS had other ideas.

What I didn’t understand – ironically because I was always locked into a steady routine for the sake of the kids – is that, as an immune disorder, it doesn’t take much for my system to think it’s fighting off an illness.

When that happens, I get inflammation, usually in my neck and hips but it can affect any joint and in recent years it’s also affected my eyes. Iritis is an inflammation of the iris associated with AS.

The best defence is to avoid stress, eat well, exercise and stick to a good, steady routine. As much of dull, colourless and boring as you can stand and still consider yourself a functioning human being.

Which was the exact opposite of my dream job.

As time went on, the spaces between the flare-ups grew shorter and instead of getting Iritis roughly every two years, it was turning up every few months.

My rheumatologist put me on a very low dose of chemotherapy to try and dampen down the symptoms, which it did, but the tiredness remained as bad as ever.

I was at my wits end. I can’t describe the level of pain and exhaustion I was living with, along with the panic of knowing that I simply wasn’t functioning enough to trust that I was making good decisions.

Exactly 12 months ago, during Anky Spondo Month as it turns out, I did the only sensible thing and walked away.

A year later and the change in my well-being has been remarkable.

I’m off the chemo and taking only anti-inflammatories and the occasional painkiller. My energy level is back to normal and my work-life balance is everything I could wish for.

I started the blog in January as a bit of a replacement for that cool job which I loved so much and it’s given me nothing but enjoyment.

The role of casual observer and occasional remarker has not given a moment’s stress or anxiety.

I can’t explain this latest wobble. Sometimes the cause of a flare-up is obvious. Sometimes it isn’t. Accepting that is one of the biggest challenges of living with this disease.

So a Hat Tip to everyone facing their own health challenges. Sometimes they slow us down and force us to take a slightly different direction, but the journey continues.

I’ll get back to Gillard, just not this week.

I’ll also continue to wander the intricate laneways of the Twitterverse and report back on what I find. And there’ll be more dipping into the family history with tales of the Big Baxter and the Hong Kong Beat.

If you came for the Ankylosing Spondilitis, welcome, and I hope it’s been of interest. I do hope you’ll stick around for the ride. No idea where we’re headed, but with a little wit and good humour we might have some fun along the way.

© Sally Baxter 2012
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About Sally Baxter

Once I was a girl reporter. Now I'm an interested observer covering the past, present and future of journalism and whatever else takes my fancy. All views my own.

Discussion

7 thoughts on “Ankyspondydoodah… doodah… doodah

  1. The son of an old friend was diagnosed with AS nearly 10 years ago. Zac follows pretty much the same routine, plenty of exercise, good food and occasional pain killers. He’ll be 30 soon and is managing things well – managing to enjoy life and certainly a LOT fitter than I am. All the best!

    Like

    Posted by Greybeard | April 8, 2012, 1:07 pm
  2. Ah, I completely understand…I live with that closely related annoyance, rheumatoid arthritis. Same sort of symptoms, same sort of treatment, same sort of routine…same, same, same….bummer. Anyway, like you, I try to press on and make the most of what I have to give. RAist tips hat back to ASist…and into the twittersphere we go…

    Like

    Posted by Donna | April 8, 2012, 5:06 pm
  3. Thanks Sally for the link and nice comments on my blog. Like you, AS never gave me a second thought, just some morning stiffness for over 20 years. Then in 06 the walls came crashing in. I never thought it was my AS causing it. Amazing how it can lay in wait until it decides to rear it’s ugly head. Thank you for sharing your story with me and hope you continue to enjoy my posts as I will yours. Lots of humor gets me through each day!

    Like

    Posted by Joyce Lameire | January 27, 2013, 12:13 am
  4. You are my sunshine 🙂

    Like

    Posted by Nina | May 3, 2014, 6:07 pm
  5. Hi,

    Healthline just designed a virtual guide of the effects of ankylosing spondylitis on the body. You can see the infographic here: http://www.healthline.com/health/ankylosing-spondylitis/effects-on-body

    This is valuable med-reviewed information that can help a person understand how AS will affect their body. I thought this would be of interest to your audience, and I’m writing to see if you would include this as a resource on your page: https://sallybaxter.wordpress.com/2012/04/08/ankyspondydoodah-doodah-doodah/

    If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternative to help get the word out.

    Thanks so much for taking the time to review. Please let me know your thoughts and if I can answer any questions for you.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    http://www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

    Like

    Posted by Maggie Danhakl | May 21, 2014, 2:42 am

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