Enough is enough is enough...

_________________________________________

If you've had enough, don't put up with his stuff  

Don't you do it  

Now if you've had your fill, get the check, pay the bill  

You can do it
 

Tell him to just get out  

Nothing left to talk about  

Pack his raincoat, show him out 

Just look him in the eye and simply shout
 

Enough is enough is enough I can't go on, 

I can't go on no more, no 

Enough is enough is enough I want him out, 

I want him out that door now

- Donna Summer, Enough is Enough (No More Tears)

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Dear Arthur,

Enough is enough.  At this time of peace and goodwill towards all men, I find myself remembering that you are not a cantankerous child, and in fact a right difficult diagnosis, or inanimate/invisible disease. 

You are testing me right now, Arthur.  You have tested me many times before, and I've no doubt you will continue to do so long into our less-than-loving relationship.  I compromise for you daily, and during times like these where I must make the tough decisions for my own long-term health (which usually involve a short-term nightmare where you are concerned), you test me with greater challenges and try my patience even  more than usual.

So much of you reminds me of a boyfriend I had once upon a time.  I chose to see only his good points, where everyone around me could see his volatile temper, and the many other traits that ultimately resulted in his demise.  But, for the sake of my mental and physical health, I ended it.  Unfortunately our relationship is not so easily terminated, Arthur.  I am stuck with you, for better or worse, in sickness and in health, for richer but inevitably poorer, for as long as we both shall live.

Worse still is that despite it all, our relationship affects the relationships I have with the people I love.  Cancelling plans because you have robbed me of all semblance of energy, or you have decided to throw one of your catastrophic tantrums which has left me with too much pain/too much inflammation/not enough resolve to function.  Not being able to do the spontaneous things - like change the plans from takeaway and a relaxing night in, to dinner at a restaurant.  I can't handle these things, because you rob me of my reserves daily, and leave me with no energy, no emotional safety net, no sense of humour to truly enjoy myself.  When you are being selfish, the invitations dry up, because my friends know how much it devastates me to have to say no, or cancel at the last minute.  I try to put on my brave face and pretend that it doesn't matter, but it hurts.

You hurt me.  On days like today when it takes every ounce of courage and resilience I have to get up, dress up and show up; you continue to strip me of any energy I thought I had.  According to my pedometer, I have walked more steps today than I have in months.  Yet here I am, exhausted and broken.  Too sore to make myself anything for dinner.  In too much pain to find a comfortable position in which to get some sleep.  Too exhausted to contemplate the less than 12-hours until I have to do it all over again.   Yet I will.   Because though you may leave me battered and bruised, limping and frail, with less energy than most would deem minimum for basic functions; you cannot break me.  Because my body is broken, it makes my mind stronger, my will more impenetrable, and my resolve more stubborn than ever before.  

So to you, Arthur - Merry Christmas.  And I would imagine Santa will leave you on the 'naughty list' for good; because heaven knows you are unlikely to ever behave yourself long enough to graduate to the nice list! 

So this is Christmas...

.. and what have you done?
Another year over - a new one just begun.

This is a question I seem to ask myself every year.  I cannot believe 2012 is nearly done and dusted.  It feels like only yesterday we were celebrating the start of 2012 - and here we are, about to do the same for 2013!

It's Christmas Eve Eve here in Australia.  I've wrapped all the presents, done my share of the "Christmas Cooking" and cleaned the house in anticipation of the holidays.  I say holidays as a plural, however I have exactly one day off work, so I guess the 'holidays' are not as relevant to me as they are to most!  Not that I couldn't do with the break, though...

It's been a busy month.  Work has been crazy (not in the DSM-IV psychiatric evaluation sense, but rather the run-off-our-feet-battling-bed-block-and-sick-people-coming-out-of-our-ears sense), with little to no time to worry about RA.  That said, it hasn't been a healthy month.  First up, I had a ripper flare that required two steroid infusions to bring under control, because the 50mg a day of prednisolone wasn't cutting the mustard.  Then, a big old stomach ulcer reared its head - so, after an OGD (my first - I always knew the day would come but I had put it off!) the diagnosis of a pre-pyloric ulcer wasn't exactly a surprise.  The down side was that it bled with the slightest contact with the camera, which means 5 weeks off NSAIDs, with minimal steroids and huge doses of PPIs and H2As to try and induce some healing so they can biopsy it.  It's gonna be a long few weeks...

The minor surprise that came with the scope was the confirmation that I have Sjögrens.   My eyes have been dry and easily irritated as long as I can remember; my mouth is always dry as a chip, and now it turns out my GI tract is 'obviously' that of a Sjögrens patient.  Turns out I am collecting auto-immune diagnoses like some people collect coins or stamps!

So what have I done this year?  I have gotten two steps closer to my post-graduate qualification.  I have been published on Mamamia, which I won't lie - it was a wonderful day for me.  To have RA recognised in public on a site that is visited by thousands of women every day was a fantastic PR boost for people everywhere with autoimmune diseases.  Even better is the feedback I got as a result - friends who told me they wept, shared it with their family and friends, and one who sent the link to her in-denial-with-RA friend (who now takes her meds, realising she has it pretty good!).  The message is filtering out, ever so slowly.  The messages I received from the wonderfully inspiring Christine Schwab and Barbara Mockford who thanked me for sharing my story, and encouraged me to continue to share it with the world.  On a personal note, I have gotten myself to a far better headspace and continued to work towards achieving more of my personal and professional goals.  Looking back it doesn't seem like much, but as any RA patient will attest - sometimes just opening your eyes and getting out of bed feels as big an achievement as winning a Nobel Peace Prize!

Despite the pain, the struggles and the treatment failures, 2012 has been a good year.  This Christmas will be a quiet affair, with just my immediate family.  And I can't wait.  To spend a quiet day with no work, minimal stress (hey, someone has to cook lunch!) and surrounded by the people I love most in this world is my idea of the perfect day.  Irrespective of my pain, I know it will be a wonderful day - and I hope it is the same for all of you.

Wishing you all the merriest of merry Christmases,
and a safe, happy and healthy 2013!

Home sweet home.

Amongst other things, I am very proud of the city in which I live.  It is where I grew up, have returned to following stints living elsewhere, and the place I will always call home.  Most importantly, it is where my family are, and that means that no matter what may happen, I will always come back here.

That place I speak of is a little town in northern Tasmania by the name of Launceston.

Our population is a little over 100,000 people, and we have a few claims to fame.  Launceston is one of Australia's oldest cities, was the location of the first use of anaesthetic in the Southern Hemisphere, the first Australian city to have underground sewers, and the first Australian city to be lit by hydroelectricity.  

Launceston has bred its fair share of influential people.  It is the hometown of the likes of Ricky Ponting (former Australian cricket captain), David Boon (former Australian cricketer), Daniel Geale (World Champion boxer), Peter Sculthorpe (contemporary composer), Simon Baker (actor), Rachael Taylor (actor), and Marcos Ambrose (NASCAR driver and former V8 Supercar champion).

The reason for my post is two-fold.  I adore the place I live - the issues of living in a capital city such as spending half your day in transit to or from work, simply do not exist here.  The air is clean, the people friendly, the food incredible and the cost of living reasonable.  But I'm not trying to sell the lifestyle too much - I kinda like my small city with its conveniences, and an influx of new residents would complicate these things!

No, the main reason is to encourage people to visit.  If you, like me, are a fan of Masterchef Australia, you will recall the week they spent in Tasmania in this year's series.  They showed off much of the fantastic lifestyle we enjoy down here, focusing mainly on the fresh produce and incredible food (for obvious reasons) that we enjoy.  For this reason, I am giving a few blogs a plug below if you are considering a trip to our fair isle, because once you've visited - you may find it hard to leave.

Getting here: you can fly, or you can hop on the Spirit of Tasmania (with or without a car) out of Melbourne and take a more leisurely journey.  Word from the wise, however - I highly recommend splashing out for a bed if you're doing an overnight run (heck, even if you're doing a day crossing) - the couches and deck chairs aren't all that comfortable for a 10 hour trip, and it's kind of nice to be able to stretch out and relax.  The Spirit website often has deals so keep an eye out for specials, but Virgin and Jetstar are pretty reasonable most of the time to get on and off the island.

When in Launceston: head to the Cataract Gorge for a near-surreal experience under 5 minutes walk from the CBD.  It's my little piece of paradise and allows me to escape reality for a little while.

The Cataract Gorge - beautiful, yes?

For the wine lovers, there are plenty of beautiful wineries on the Tamar Valley Wine Route (though my personal favourite for food and wine and amazing scenery is Josef Chromy Wines at Relbia - you can thank me for this recommendation later), and the beer lovers will be delighted to know that the J. Boag and Son Beer Factory has tours and tastings in the centre of town.  

Hungry?  Oh, so many places to direct you to for fabulous food.  Stillwater, Hallams Waterfront Seafood Restaurant, Black Cow Bistro, Pierre's, Novaro's, Elaia Cafe, and Fresh on Charles,  are all consistently excellent places to eat.  I can't do justice to them individually, but some of them are reviewed in the blogs at the end of this post. 

While you're here, you should also see: the Anvers Chocolate Factory, Ashgrove Cheese Factory,  Christmas Hills Raspberry Farm... all are on your way to Launceston from the Spirit terminal in Devonport.  I recommend the Tulip Festival at Table Cape if you're around in late September - early October; or Bridestowe Lavender Estate year-round for a sea of purple flowers.  The East Coast of Tasmania is home to the Freycinet Peninsula, and is just spectacular.  Mount Wellington in Hobart is almost always home to some snow, and if you're into the cultural experiences, the Museum of Old and New Art (MONA) is a must see.  The Salamanca Markets and Port Arthur Historic Site are also high on the bucket list for your Tassie trip.  Check out the Discover Tasmania website for more great ideas of things to do and see while you're in our gorgeous state.

Blogs that have done us justice (that I've read so far...):
Baz and Lonnie
Tara Moss does Tasmania
A Table For Two (Billy Law, 2011 Masterchef Contestant) - Part 1 & Part 2


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The moral of the story - if you're looking for a getaway to somewhere where the air is clean, the living is easy, and the food sublime; look no further.  We'd love to have you visit Tasmania, and perhaps you'll never want to leave!

Dear Santa...

I've been very, very good.  Arthur; not so much.  That said, a question I get asked annually (and not just by one person, may I add) is "What would you like for Christmas?".  

Every.  Single.  Year.

I get it.  What do you get the person with everything - Rheumatoid Arthritis included?!  I know I'm not alone - once you start earning your own money, live in your own place and pay your own bills, there's an expectation (realistic, too!) that you will buy much of the stuff you want and or need.  I am here to tell you that yes, that may be true - but there are plenty of 'gifts' you can buy for someone with RA or pretty much any other chronic illness that will let them know that you both appreciate them and really put a lot of thought into your choice.  

While for me this is pretty much the 'perfect' gift I recognise it may not be the same for everyone - but hopefully my ideas will give you a cracking idea for something for Christmas, a birthday, or a just-because-I-care-gift!

Thanks to RA Guy (www.rheumatoidarthritisguy.com) for sharing this scarily accurate account of ChRAstmas!

Pamper me please!
While massages, mani/pedis and facials are an intensely personal thing, nothing (and let me say this loudly, nothing) comes close to vouchers for a shampoo and blow dry for me.  I have way too many days where drying, straightening and styling my hair is a herculean effort - so for special occasions, or periods where I am particularly sore and have neglected my mane, having a professional do the hard work is delightful.  Let's face it - someone else drying your hair is one of the best parts about going to the hairdresser, but since my hairdresser started using the L'Oreal Steam Pod I can get about 5 days out of a salon blow dry, and it leaves my hair nourished and feeling like I should be in a rival shampoo ad.  Amazing!  (I should add, if someone who loves me reads this and is still clueless as to what they should get me for Christmas - please go see my friend Alera at Lush Hair Seaport and buy me the retail version of the Steam Pod.  I would love you forever - though vouchers for shampoo/blow dry/Steam Pod would be pretty amazing too!)

Other gifts that you might like to consider:
The gift of normalcy
I'm not going to lie - on days when I feel like utter rubbish, the gift of normalcy would go down a treat.  Think a 'voucher' for picking your friend up for lunch (not driving is such a luxury when you feel a bit sub-par), or even just out for coffee, ice cream, or if they're up to it, a drive in the sunshine to a destination to catch up.  

The gift of assistance
We've all let our gardens get out of control, or the lawns grow to jungle-like proportions, or ignored the vacuuming/dusting/cleaning/ironing when we're not feeling our best.  Again, the services of a professional cleaning company for a quick once-over is a fabulous gift for the energy-challenged, or as a welcome home gift from a stint in hospital.  If you're willing to get your hands dirty, giving a card with this promise is also a lovely gesture - though I know my pride will often get in the way of taking a friend up on the offer. 

The gift of comfort
A girl with chronic pain can never have enough wheat packs, comfy cushions/pillows, and soft rugs/wraps.  As we speak I am propped up on half a dozen pillows in bed, with a heat pack around my neck (a long one so it doesn't fall off), one down my spine and another long one around my hips, and a throw rug over my legs.  I'm totally rocking my inner Nanna, but by goodness there's a comfort to it!  Products like this Sunbeam Heated Throw Rug, the Sunbeam Quilted Massager with Heat, and the Sunbeam Back and Neck Heat Pad have long been on my wishlist for obvious reasons!

The gift of distraction
Everyone has their 'thing'.  Mine is having brightly coloured nails (to distract people from my swollen, red and angry-looking hands.  For this reason, I always welcome the gift of a voucher for nails (think the long-lasting gel polishes that are all the rage at the moment, or the nail foils that last around a month on toes), or a fabulous new season colour that is all the rage.  I am a big fan of stalking friends' Pinterest pages for inspiration (and if you haven't signed up for Pinterest yet, be prepared to get addicted)!

The gift of healing
I have found a few bits and pieces in my time that help me to heal and strengthen my body - and this one is two-fold.  This awesome Starlight Foundation Stress Star not only helps improve and maintain my grip strength, but also supports a very worthy charity in the process.  I would also like to point out that I would know someone truly loved me if they gave me hope for a cure for Christmas, by donating to Arthritis Australia!  If your gift-ee is an all-round charitably-minded person like myself, donations to the likes of Unicef, World Vision, the Starlight Foundation, Make-A-Wish, Canteen or my personal favourite, the Inspire Foundation are all very worthy gifts for your friends, and the world!

I should add - if you have given or received a gift that has completely shifted the Earth on its axis (or perhaps just brought a very big smile to the face of the receiver) please feel free to share it in the comments below!

Another stint on the steroids, another sleepless night.

Ahh, the 'roids.  They rob you of sleep, and of your stomach lining.  So vile, yet so necessary!

They have, however, given me some time to catch up with some blog-reading I have been neglecting.The first post is from the Invisible Illness Week Website which encouraged people with Invisible Illnesses to share the following thirty things about their invisible illness.  It seemed easy enough - but some of my answers came a little easier than others.  

Things About My Invisible Illness You May Not Know

 
1.  The illness I live with is: Rheumatoid Arthritis, with added elements of PMR, migraines, atopy and Sjögrens.
2.  I was diagnosed with it in the year:  2003
3.  But I had symptoms since: 1996 (though it is only now with the benefit of hindsight that I can see that.  The big warning signs with the flashing neon lights didn’t show up until about 3 months before I sought medical advice).
4.  The biggest adjustment I’ve had to make is: Acknowledging that the girl who once burned the candle at both ends is now a woman who needs her rest!
5.  Most people assume:  That I am not in pain because I have got up, dressed up and showed up.
6.  The hardest part about mornings is: The realisation that I have about 16 hours before I can rest again – and I probably haven’t got enough rest banked to cope.
7.  My favourite medical TV show is: Grey’s Anatomy – mostly because it is so unlike the hospital where I work!
8.  A gadget I couldn’t live without is:  My Bic XXL pen.  Despite the computerisation of our world,there are still an awful lot of times you need a pen! That and my OXO Good Grips stuff in the kitchen.
9.  The hardest part about nights is:  Finding the balance between minimising pain in order to sleep – but not taking so many meds that I am zonked out the next day. Assuming I’m not on prednisolone and therefore staying up all night anyway.
10.  Each day I take: Many, many more tablets and vitamins than any of my patients.
11.  Regarding alternative treatments I: am willing to give pretty much anything a go if it may give me some relief from pain, or improve my quality of life.  I have regular massages and cupping to loosen off soft tissue to ease pressure on my joints, and often head to my physio for dry needling of more serious issues.
12.  If I had to choose between an invisible illness or visible I would choose:  Visible.  I think the judgement would be less, and the understanding greater.
13.  Regarding working and career:  So far I have managed to maintain my planned career trajectory, with a few compromises along the way.  At the moment I am studying on top of working in order to gain an extra qualification that will (hopefully) give me some career flexibility if my body puts a stop to my current plans.
14.  People would be surprised to know:  That my brave face is exactly that – a façade. I can count on one (crippled) hand the number of days I have been ‘comfortable’and ‘relatively pain free’ in the past 3 months.
15.  The hardest thing to accept about my new reality has been: That pain is going to be a near-constant companion, irrespective of anything I may try to do.
16.  Something I never thought I could do with my illness that I did was:  Live on my own, and be mostly independent.  Believe me – when you have days where you can’t dress yourself, let alone get yourself from your bed to the bathroom to the kitchen and back, being on your own is a big achievement!
17.  The commercials about my illness:  Do not exist. 
18.  Something I really miss doing since I was diagnosed is:  Music.  Where once I would give hour-long violin recitals and play whole concertos, I can now only reminisce.  It breaks my heart whenever I think about it.
19.  It was really hard to have to give up: Music.  I may have moaned about the dedication it required at the time, but now it’s not a part of my life I miss it terribly.
20.  A new hobby I have taken up since my diagnosis is: Writing.  The first few times I was published I was so proud that I had taken my negatives and turned them into positives!
21.  If I could have one day of feeling normal again I would: Climb the Sydney Harbour Bridge, then go on lots of roller coasters and rides, and finish the day dancing into the early hours of the morning at a great nightclub wearing towering heels! (I interpreted normal as normal with Energizer Bunny amounts of energy)
22.  My illness has taught me: The way you cope will depend entirely on your attitude.
23.  Want to know a secret? One thing people saythat gets under my skin is: The lack of understanding I sometimes get from people who should know better – my family, friends, and colleagues.  I don’t cancel our plans because I change my mind, I cancel because my body has a mind of its own.
24.  But I love it when people: Show they care by verbalising how they care, how they want to understand, and want to help me in any way they can.
25.  My favourite motto, scripture, quote that gets me through tough times is: “A true optimist never lets life get in the way of living”.  Yes, that was written by me,but I think it speaks volumes about both myself and my disease.
26.  When someone is diagnosed I’d like to tell them: It won’t be fun, and it sure as hell won’t be pretty – but you are going to learn more about yourself and those around you than you ever dreamed you would.
27.  Something that has surprised me about living with an illness is: How, even as a health professional and chronic disease sufferer, I can sometimes feel no empathy for other people with a chronic illness.  The way some people – healthy or otherwise – treat their bodies astounds me daily. Frustrates me no end!
28.  The nicest thing someone did for me when I wasn’t feeling well was: took the time to send me mail, to keep me feeling in the loop, to bring me my favourite take away and stay and chat for a while.  It made me feel normal for a few moments and forget about how awful I felt.
29.  I’m involved with Invisible Illness Week because: If everyone with an invisible illness spoke out, there would be no such thing as invisible people.
30.  The fact that you read this list makes me feel: Honoured.   

Rollercoasters... do you scream?

I've always been one of those people who loves a good rollercoaster.  The thrill of the speed and the twist, turns, drops and the loops, have always gotten my heart racing in the "I'm-so-excited-I-could-squeal" kind of way, as opposed to "I'm-screaming-and-crying-and-I-want-to-get-off".  Heck, I've always been a bit of a speed demon - I had the opportunity to take a spin around Symmons Plains in one of the V8 Utes in June this year, and grinned my little face off the whole way.  My driver, a friend from way back, warned me to give him the thumbs down if I wanted him to back off - instead I saw him glance my way on the straight and just chuckle.

But sometimes life sends you on a rollercoaster you hadn't prepared for.  Which makes me wonder - do I really love them, or am I just able to mentally prepare myself for all the twists and turns so that I cope?

This week has been a proper rollercoaster.  A win with a patient at work, who we thought for sure had taken a turn for the worse.  Up.  Witnessing a woman who I think of as a mentor be disrespected and humiliated.  Down.  A friend giving birth to her much-awaited baby daughter.  Up.  

And then, the clincher. 

A friend and colleague, diagnosed with breast cancer in her early 30's.

Boom.  That's rock bottom, right there.

I had no words.  No emotion.  No tears.  Just numbness.  And I am both grateful and heartbroken that the news came second-hand, and I didn't have to process and try to find something both adequately sympathetic and supportive on the spot.  This woman is a beautiful, caring, generous soul who is selfless and unconditionally supportive of me on my journey.  It breaks my heart that now she must go through a horrendous journey of her own.  She is a sister, a mother, a wife, a friend, and though I am by no means a religious woman, I pray that the strength of character and will that she will need in the coming weeks and months is close by.

Sometimes the rollercoaster is fun.  Other times it scares you senseless.  But I guess that's half the fun of living - you get on, not really knowing what kind of ride you are about to have.

Long time, no see...!

Ahh, it's been a while.  Again.

Life gets busy sometimes, doesn't it?  I am often guilty of taking on too much - attempting to do too much.  I know that anyone who has RA will be able to identify with it, but I am sometimes too naive for my own good.  I have a few consecutive days where I would rate myself as 60% or better, then I get excited and do too much, which sends me spiralling back to where it all began.  It's a silly thing to do, and I know it, but it doesn't ever seem to stop me!

I spent the weekend in Brisbane, soaking up the gorgeous sunshine and an extra 10 degrees on my usual days, and celebrated a dear friend's wedding.  I have never seen her look so proud and gloriously happy, and I was there for her graduation!  I am so thrilled that such a kind, generous and loving soul has found someone who compliments her so beautifully, and I was so honoured to be able to share their special day.

The wedding was obviously a high point of my weekend, but there was one other thing that was wonderful about my weekend - I read.  Not for work, not for uni, not to learn, but for the sheer pleasure of reading.  And boy, had I missed it!  I spend so much time reading protocols, guidelines, textbooks, journal articles and other studious media that I had quite honestly forgotten how wonderful it is to immerse yourself completely in a book.  I deliberately took a book with me that I knew would be light and enjoyable - "The Younger Man" by the lovely Zoe Foster - and after devouring it in a few hours, had to find something for the plane home.  I was pleased to find a book that I had seen a review for and hadn't yet had a chance to track down - "Band-Aid for a Broken Leg - Being a Doctor With No Borders (and other ways to stay single)" by Damien Brown.  

I am halfway through and if not for having to go to work, I'd have stayed in bed this morning (under my doona) and finished it off.  Check out the many, many positive reviews and track down a copy of the book if you can - it's a fascinating insight into Medecins Sans Frontieres and the marvellous work they do, not to mention the mental toughness of the people who do the work.

On that note, a big weekend (including wearing heels and walking about 20km) means I am utterly exhausted and ready for sleep.  Bring on next weekend, and my first opportunity to sleep in!

Time flies...

... when you have a deadline to meet.

A lot has happened in the past few weeks.  Unfortunately, none of these things involved getting my appetite back.

First things first - I "celebrated" my thirtieth birthday.  I use the term "celebrated" loosely, as there wasn't much to celebrate.  I'm not someone who gets too caught up in birthdays and celebrations and organising huge parties - but I'd like to think people will remember, even if they don't get an invite to a celebration.  This year, not many people did.  It broke my heart and is still a pretty tough realisation to have - people who I will always go out of my way to buy a card, a gift, send flowers, or call for their birthdays didn't even acknowledge the occasion.  There are so many emotions caught up in it all, and I don't want to go into it further, but allow this to be a cautionary tale - aside from occasions like Mother's/Father's Day, birthdays are the only day we celebrate the people we love. 

Speaking of feeling like rubbish - if the constant nausea for the past 6 weeks hasn't been enough, throw a hefty dose of sleep deprivation into the mix.  It's testing me in more ways than one, but I could put up with it when I was pushing myself to stay awake to finish assignments.  It's nearly 3am on Monday morning now, with absolutely no purpose to my insomnia whatsoever.  The worst part is that I am utterly exhausted  - physically, mentally and emotionally - yet sleep continues to be difficult to come by.  

After all the things that bring my mood down, it was lovely to see my rheumatologist for my usual check-in.  To his delight, and mine, things were good.  The difference in my body between drugs that work and those that don't is nothing short of remarkable.  I always find Dr G to be a pretty measured man emotionally speaking, but even he couldn't hide his delight in my progress.  We don't get many wins in auto-immune diseases, so I'll take this one!

Anyway - time to attempt to get at least a couple of hours sleep in.  Pity my colleagues, and the patients in ICU tomorrow... their pharmacist is going to be a little sub-par!

Positive (side) effects

 

My extended blog-absence was precipitated by my contracting a bug from work.  I'll spare you the gory details (believe me, you should thank me for that much), but it was a bug called norovirus - which basically induces the most severe, undignified form of gastro you can imagine.  My mother came to check on me after my first night of agony and was horrified with the condition in which she found me.  I admit, I don't think I've ever been so ill - and the fever was in full swing by that stage.  While she wouldn't admit it at the time, she was really scared (and I won't lie, I looked remarkably like a corpse) so when she couldn't convince me to go to the hospital, she ended up staying the night to make sure I would be ok.  What a trooper my darling Mum is.  One of the worst parts of the whole experience was the complete inability to hold anything down - fluid, food, drugs... which meant that everything else went pretty haywire for a while there.  I am so grateful now for the ability to be able to swallow, retain and absorb my usual meds that keep me functional.  Something so simple, but it makes all the difference to ones quality of life!

Anyway, the silver lining to the norovirus - trust me when I say I had to find one, because there wasn't much about the experience that was in any way pleasant - was that the fluid retention of almost 8 months of steroid therapy got eliminated in pretty dramatic fashion.  While there is still some residual fluid that's calling my knees home, the oedema and swollen ankles are gone.  Vanished.  Kaput.  At my 'lightest' during my ordeal, I was 14kg under my pre-virus weight.  Yes, you read that right.  FOURTEEN KILOS.  I'm now about 8kg lighter, now I have been able to stomach small amounts of food and fluids (mostly in the form of icy poles).  It's been a bit over a week since it all began and only tonight can I say I feel relatively normal.  There's still some residual nausea which I'm guessing will take a little while to leave, but at least now I am eating food again.  Granted it's pretty plain and boring (still too scared to eat anything dairy or rich) but it's food!

Speaking of food, I'm such a Masterchef Australia tragic.  I adore the show, the people, the food - but being the proud Tasmanian I am, my absolute favourite this year was Ben.  Ben finished in 5th place this year, with his best mate Andy taking out the title - and I have to say, all bias aside, they came across as two of the most genuine blokes on television.  The kinds of guys you want to have a beer with at the pub, or kick a footy around with at the park, or take home to your Mum.  I was so thrilled when Andy was announced as the 2012 winner last night - truly a win for the nice guys, and the food he served up was spectacular.  I really look forward to having the opportunity to eat at their restaurant (rumour has it that the boys, along with fellow contestant Kylie, are going to be running a pop-up restaurant in Tassie soon... I hope I get the chance to go!) and see what they do next.  Ben's success is such a win for my home state, because he's a passionate about being Tasmanian and living here as I am, and I know he'll promote the state, our wonderful food and our clean air far and wide.

Ben outside the Callington Mill in Oatlands, Tasmania

When the person in the mirror isn't you anymore.

Following a considerable period of time where my RA has been completely out of control (read: constantly flaring), my lifestyle has changed in a big way.  Where once I would go for a walk a few nights a week after work (after letting my gym membership lapse the last time I went through a rough patch), I have become relatively sedentary.  I get home from work (which is spent mostly on my feet, and even on a day that I'm "taking it easy" seems no trouble to accumulate 8000+ steps) and am completely exhausted, so the thought of cooking dinner is not only traumatic from a "what on earth am I going to eat?" point of view, but the thought of spending more than a moment more on my feet is utterly out of the question.

The results have been slow coming, but the last week or two when I look in the mirror I don't see myself any more.  I've always had reasonably prominent cheekbones, a defined jawline and chin, and as I approach thirty the tell-tale signs of a life of laughter - crow's feet and smile lines - were starting to appear.  Between my lifestyle changes and the ridiculous amount of steroids I have poured into my body in the hope of gaining some semblance of control, I have stacked on a ridiculous amount of fluid and weight.  The worst part is that first moment you brave putting your feet on the floor each morning.  The pain that is a normal part of my morning routine is deterrent enough, but when there's an extra 15kg resting on inflamed toes, feet, ankles, knees and hips - well, it's not ideal.

So what now?  The steroids can't go - this week's flare has been a harsh reminder that one should never get ahead of herself, nor too optimistic about the potency of new therapy!  My diet isn't terrible, but let's face it, we could all eat better.  Exercising sounds wonderful - but the physical exhaustion is a killer, and while I would love to swim or Aquarobics or AquaZumba, the simple fact of the matter is that my skin simply won't tolerate the chlorine content of any pool within a few hundred kilometres.  Darn you children who insist on putting the "P" in "Pool".

Instead, I'm going to have to get drastic.  We're talking severe caloric restriction.  We're talking dramatic turnaround time - because wedding season is nearly upon us and I'm determined to wear 'nice' shoes rather than 'sensible, boring' ones, and that means ditching some of my excess baggage.  I'm determined to find a source of exercise that is a) fun, b) minimal-impact, and c) will inspire me to get moving even on the days I would rather slip into an analgesic-induced coma.  I'm not sure I can manage to recognise the girl in the mirror before I hit thirty - but I know I can make some changes between now and then to know that she'll be returning sooner rather than later... wish me luck!

PS  In addition to Thirty Things About Approaching Thirty, the amazing Em Rusciano (follow her on Twitter) has posted her set of questions on Mamamia today.  Check it out. 

"If you want to see a hero..."

"... look at a person with RA.  I've never met someone with RA who isn't a genuinely nice person.  With everything they put up with, day to day, they have every right to complain, to be bitter, to be anything but nice."

Those words were spoken by one of the respiratory consultants at the hospital where I work.  He doesn't know me, nor that I have RA - but I thought that was about the nicest thing I'd ever heard a doctor say about a patient group.  My colleague who heard this statement said she immediately thought of me, my martyr-dom and my stoic nature.  My ability to put on a brave face irrespective of how much pain I might be in.  How I still manage to put my patients first when I would be well within my rights to feel as though I would be better off in the bed.

Hearing her speak so positively of my positive traits, I felt a little like an imposter.  Truth be known, I cried a number of times today - simply because standing, sitting, moving, thinking - was all too painful.  I went out for dinner tonight (against my better judgement) for my darling mother's birthday.  The tears streaming down my face as I tried to get myself down the three steps from my front door, then lower myself into the car, then over bumps in the road, then trying to unfold myself from the seat... I had conveniently forgotten how every movement requires bracing yourself for the next moment that will jolt something that hurts.  Now I am laid up in bed, electric blanket cranking, propped up on pillows to avoid the painful joints having unncessary pressure placed on them.  If I didn't know better I'd think at least two of my toes were dislocated judging by the pain they are generating.  Don't even get me started on the bigger joints like knees and hips and shoulders and elbows.  

But then I think of those kind words spoken by Dr M.  How he's in awe of how we cope, how we compromise, how we continue on our merry way with this disease.  It makes me think of how I am secretly proud by the shocked expressions on people's faces when I reveal why I am limping, or wearing my compression gloves, or why I had to take an extended absence from work with no notice.  I'm proud because they don't think I have a disease, they think I'm a perfectly healthy human being.  It means the facade is holding up.  My ability to apply makeup so I look like I've got a healthy glow and have had a full night's sleep is hanging in there.  I do my best to fool the world every day - because perhaps if I can fool them, I can fool myself for a moment.  To remember a life with no pain, no struggle, no compromise...

This time tomorrow...

... I'll have my paws up.  Yes, they're slightly crippled and swollen paws, but they have neon pink nail polish on their nails to pretty them up.

Saturday night I and a few thousand others will be celebrating our uniqueness in the presence of the lady who inspired so many to embrace self-acceptance, Lady Gaga.

There's not much to say about her that people don't already know - she can be wacky, weird and wonderful all at once, and her hair and costumes divide the world in two.  

But when all is said and done, she makes great music, has a voice that is unique and incredible all at once, and she does all this while living under the cloud that her SLE might become a big part of her life at any time.  As anyone with an autoimmune disease will attest - the thought of even rolling over in bed can be too much some days... let alone a concert tour of 110 shows, spanning five continents.  I'm exhausted thinking about it. 

On that note... this is one of my favourite Gaga tracks.  Here she is performing for the Queen at the Royal Variety Performance.  I hope I am as mesmerised by her in person tomorrow night as I was by this performance!

Thirty things about approaching thirty...

My thirtieth birthday is rapidly approaching – and despite plentiful reassurance from friends who have surpassed this auspicious milestone, I can’t help but fluctuate between being completely at ease with (and just a little bit excited about) it, and the opposite end of the spectrum, being completely and utterly terrified about what is about to happen to me mentally and physically!

 

I hear this little voice in my head that says (ok, screams) “What on earth is your problem, woman?  You’ve already tackled life while feeling like a ninety year-old, so how hard can thirty be?  Really?!”.  That little voice has a very valid point – thirty isn’t that big a deal when your body ages at an accelerated rate compared to the rest of you.  And I have the advantage of not really looking my age – courtesy of some stellar genetics from my mummy dearest, and a Staph infection when I was sixteen that all but peeled all the skin off my face.  Sounds revolting – and trust me, it was! – but it’s meant that my skin is relatively new compared to the rest of me, and it’s forced me to take really, really good care of it, resulting in an almost flawless complexion that doesn’t look thirty (and neither it should, given it’s only 14 years old!). 

Some friends and I were talking about what thirty meant over dinner a few weeks ago.  The thing that we universally agreed on was that none of us – not those of us with incredible careers, or married, or with families, or well-travelled – had achieved all our twenty year-old selves had hoped we would by thirty.  My twenty year-old self had pretty lofty expectations for thirty year-old me.  I had imagined myself working as a pharmacist (tick) in a hospital (tick), married (buh-bow) and contemplating starting a family (buh-bow).  I had hoped I would have seen the world (buh-bow).  I thought I would be paying off my own home (buh-bow), having already paid off my HECS debt (buh-bow), and contemplating some post-grad study (well, I’ve already started – so I guess that’s a tick).  My expectations of myself didn’t change, even though I was diagnosed with RA at 21, I assumed (naively) that it would make absolutely no difference to my life plan.  While I don't blame it for any of the crosses against my twenty year-old self's plans, when it comes to what I thought my life would look like by now - oh, how wrong I was!

In searching for other people’s expectations of themselves at thirty, I found this list that was originally published a few years ago.  The completely hilarious Em Rusciano (follow her on Twitter @emrusciano) wrote a post about it on Mamamia a couple of months ago. 

By 30, you should have:

1. One old boyfriend you can imagine going back to and one who reminds you of how far you’ve come.
2. A decent piece of furniture not previously owned by anyone else in your family.
3. Something perfect to wear if the employer or man of your dreams wants to see you in an hour.
4. A purse, a suitcase and an umbrella you’re not ashamed to be seen carrying.
5. A youth you’re content to move beyond.
6. A past juicy enough that you’re looking forward to retelling it in your old age.
7. The realisation that you are actually going to have an old age—and some money set aside to help fund it.
8. An e-mail address, a voice mailbox and a bank account—all of which nobody has access to but you.
9. A résumé that is not even the slightest bit padded.
10. One friend who always makes you laugh and one who lets you cry.
11. A set of screwdrivers, a cordless drill and a black lace bra.
12. Something ridiculously expensive that you bought for yourself, just because you deserve it.
13. The belief that you deserve it.
14. A skin-care regimen, an exercise routine and a plan for dealing with those few other facets of life that don’t get better after 30.
15. A solid start on a satisfying career, a satisfying relationship and all those other facets of life that do get better.

By 30, you should know:

1. How to fall in love without losing yourself.
2. How you feel about having kids.
3. How to quit a job, break up with a man and confront a friend without ruining the friendship.
4. When to try harder and when to walk away.
5. How to kiss in a way that communicates perfectly what you would and wouldn’t like to happen next.
6. The names of: the Governor General, your great-grandmother and the best tailor in town.
7. How to live alone, even if you don’t like to.
8. How to take control of your own birthday.
9. That you can’t change the length of your calves, the width of your hips or the nature of your parents.
10. That your childhood may not have been perfect, but it’s over.
11. What you would and wouldn’t do for money or love.
12. That nobody gets away with smoking, drinking, doing drugs or not flossing for very long.
13. Who you can trust, who you can’t and why you shouldn’t take it personally.
14. Not to apologise for something that isn’t your fault.
15. Why they say life begins at 30.

For the most part, I think I have the list under control.  Granted there are areas of my life that I have prioritised more than others in recent times, and as such things like ‘A solid start on a satisfying relationship’ have been abandoned due to lack of interest - hey, I live in the small town where I grew up, pickings are slim!  But that said, given I now have six weeks until I depart my twenties, perhaps I should be getting my act together and ticking a few more things off my list...!