Ulysses the unpleasant.

Stormy weather.  Nothing says a massive "screw you, you're going to feel revolting today" like some uncharacteristic electrical activity in the skies!

This isn't a picture of today's storm, but I dare say it's not terribly inaccurate.

Thankfully (?) I pulled up a little rougher than normal after my propofol sleep for endoscopy #3 yesterday, and being a later appointment than usual my gastro gifted me the extra day off.  After all, a dopey pharmacist won't be saving any lives... but as it turned out, my body was pretty grateful for the persisting effects of the propofol and sleeping for much of the day.

So scope #3 wasn't exactly the success I had hoped for.  Ulysses the Ulcer (Ulysses, because it means wrathful and that's entirely appropriate!) is a) still there after 4 months of very intensive treatment and no NSAIDs or steroids, and b) still bleeds on the mildest contact which means I am leaking blood every time I eat.  This is bad news, clearly, because we all have a limited supply of the red stuff, and because I am really starting to crave chilli and curries and all things eye-sweatingly-hot!  To be perfectly honest, I would seriously contemplate selling my soul for a big dose of steroids and a Thai Green Prawn Curry!

But again, we wait.  This time it will be 6 months between visits, so I have 24 weeks, or 168 days (actually, we've already knocked one off so 167) to use my willpower to heal Ulysses once and for all!  Because 10 months without Thai food is going to kill me if Ulysses doesn't!

Never give up.

How to get instant cripple cred.

Gaga puts us all to shame. Yes. That's a 24 carat gold wheelchair.

Excessive?

Mmm... Just a bit!

I think Jerry may have had RA...

There's no "I" in team...

Anyone who knows me knows that I'm all about the team.  Everyone doing their bit to get the team across the line.

I'm also the first to admit that if it weren't for my team, I'd have broken down long ago.

My team consists of a number of people, all of whom play very different but nonetheless incredibly important roles in keeping me going in the day to day of life.  In no particular order, my team includes:

• My family.  Mum, Dad and my brother are all equally huge contributors - whether it be playing taxi, bringing me food, delivering my medication, or just general love and support, they are there 110% of the time, giving me 110% of their love.  Without them I would be nothing.
• My physio, Liz - while she hurts me occasionally, I recognise that her causing me pain is all in the name of taking it away!  She mixes traditional physio with dry needling and is also great comic relief -it's more like making an appointment to catch up with an old friend than to see a health professional.
• My massage therapist, Kristy - again, there is some pain required to get some longer-term gain, but it's all worth it.  She mixes massage techniques depending on my level of pain, including cupping, which have left me with some pretty suspect bruises in the past... and while I lay on the table we catch up on our favourite TV shows and exactly what it is that we need to be watching next!
• My general practitioner - while he is the first point of call for all my medical issues, I know that I am blessed to have such a thorough and caring man taking care of me.  We have an understanding - while I tend to vary from downplaying symptoms to pacify my panic to being a borderline hypochondriac (courtesy of a little more knowledge than is safe), I trust him and his knowledge completely - and know that he is looking out for me and my health.  That kind of trust cannot be bought!
• My rheumatologist - despite a few bumps in the road, without my rheumatologist I would have been a proper bed-bound-and-broken RA patient years ago.  I appreciate the trust he puts in me, that I will give him honest feedback on the efficacy of a treatment, or whether or not we are making progress - obviously his ability to prescribe 'the good stuff' ensures him a spot on the team - but he also happens to make me laugh which never hurts!
• My colleagues - for the most part, working with a bunch of health professionals provides me with a really supportive and caring environment in which I get to work.  Particular colleagues take this to a whole new level - instead of asking how I'm feeling, they simply ask where I rate myself on a scale of 0 to 10, where 0 is dead (or wishing I were) and 10 is turning-cartwheels-and-popping-backflips healthy - and then offer to take some of my workload  to make my day more bearable.  These colleagues - the special ones - are few and far between, but they make the earning-money-to-pay-medical-bills part of my life far more enjoyable!
• My friends - a diagnosis like RA changes your life, and not necessarily in the good way.  The thing it does do very efficiently is filter out the friends in your life who will be beside you through thick and thin - the ones who love you irrespective of how many catch-ups have to be postponed or cancelled, the ones who will think of activities that you can do comfortably rather than what you may have done once upon a time, the ones who know and acknowledge that sometimes the best Girl's Night is not out, but in.  Those friends are worth their weight in gold - and thank heavens for them!

Really, when they drop the bomb that you have RA, they should hand you the instruction manual and the first chapter should be the importance of having the best team you can surround yourself with - perhaps that instruction manual needs someone to put pen to paper (or swollen and crippled fingers to keyboard)...

Plantar fasciitis...

... wrecking lives since the invention of bipedalism!

Thank heavens for ice packs!

Would you like to feel my pain?

I would love for people to be able to feel RA.  Just for 5 minutes.  Watch them try to do their hair, or lift a saucepan from the stove top, or bend down to do up their shoes.  Not because I'm awful - but because I find people so quickly forget your pain when you don't show many outward signs.

This guy is my hero.

Thought for today...

Thought for today...

Day Nine...

I admit, this was supposed to be titled "Day Eight:" - as anyone who knows me will tell you, 8 is my lucky number and it's pretty much the only thing on earth I am superstitious about! - but some stuff got in the way.  Let's rewind.

So the 12 Week Body Transformation is going great guns.  My arthritis, not so much.  But to the important stuff - I would like to sincerely thank Michelle Bridges for changing my life.  It's only been a week, yes.  But in that week (and one day) I have lost 3.4 kg.   THREE point FOUR KILOS - and there is no way I'm going looking for them again, those buggers are not to be found.  Now, I don't know about those of you reading this blog, but for my version of the 12WBT (diet, diet and diet - because my body is dodgy and quite averse to exercise), I consider those to be some impressive numbers.  Add to that my attending a wedding where I tried very hard to eat only the healthy stuff (but I won't lie, there wasn't much!), and I am even more impressed with my loss so far.  If only someone had given me the crucial piece of information five, even ten years (or fifteen, or twenty kilos ago), what a different person I would be!

Without meaning to sound like an evangelist, the thing that I like most about the 12WBT is that it's REAL FOOD.  No shakes, no rabbit food, no soup-made-from-vegetables-I-would-rather-bathe-in-than-eat - real food.  Yes, I live alone and yes, if I tried to make everything on Mish's nutrition plan I would have more leftovers than my freezer could hold - but it's delicious and filling and I don't feel as though I am missing out.  Do you realise how important that is in a diet?  For motivation?  For perseverance?  Clearly Ms Bridges does!

A friend of mine at work had been lamenting some extra kilos that had crept on recently, but had tried a number of diets without any success - because they were too limiting, too difficult, or just too depressing (let's face it - we were given temporomandibular joints to chew (or, if your RA is as mean as mine, to cause you great pain), my friends!).  I took her some of my leftovers - which I divided up into the prescribed 'servings' - and had a giggle to myself as she exclaimed "This cannot be diet food!  How does it taste so good?  You mean to tell me I can eat this AND lose weight?".  Another convert who will no doubt be signing up for the next round...

So as for the stuff that got in the way of scheduled programming... I spent the weekend away at a wonderful wedding of two of the most compatible people on this earth.  It was a lovely occasion in a truly idyllic spot - I fell in love with it so much that I am already trying to work out when I can get back there for a few days of R&R!  On the way home I visited a family friend who lost their house in the recent bushfires, which was a very humbling experience.  But the worst was yet to come.

Shortly after arriving home, I decided a nap was in order.  I lay down, shut my eyes and got a couple of hours of nanna nap in.  I woke up and felt a little average - a bit headachey and nauseated, but figured I was just dehydrated and it would come right with a couple of paracetamol, a big bottle of water and an early night.  Long story short, the rest of my night involved 3 paramedics, 1 ambulance and a night in the local hospital where they proceeded to attempt to diagnose me based on my very technical description of "my head wants to explode".  Lots of fluids (4 L I think, but I lost count during my passed-out period), drugs and panics later, they discharged me home to my own bed which wasn't too soon according to my hips - hospital trolleys are not made for RA bodies.  

Excitement aside, I'm still not feeling a hundred percent - but I am hoping another early night tonight and more water than my body can hold will make all the difference.  Here's to taking the good with the bad - and hoping for more of the former than the latter!

Day One...

Well, wouldn't you know it - woke up this morning feeling like the RA Bus had decided to take a detour over my bed.  I had such big plans for the first day of my 12 Week Body Transformation, absolutely none of which involved starting the day in agony!  

After the pre-season fitness test yesterday, I was expecting some pain in my hamstrings (the sit-and-reach test I once smashed in high school was a part of the experience - let's just say my hypermobility is still doing it's thing, and allowing me to reach 17 cm past my toes!), which never arrived... instead it picked every joint in my body, including my TMJ.  Now, I love to talk - and my job involves a fair bit - but it even quietened me down a bit today.  That's saying something!

I must admit, despite less than 1200 calories passing my lips, I don't feel as though I've missed out.  I can say that on day one - ask me again on day twenty one, or fifty one! - but I ate delicious food, felt positive about what I'm doing and most importantly, didn't once think about stopping off at the kiosk at work for a Freddo frog, despite walking past it at least 20 times over the course of the day!

I also downloaded the Calorie King ControlMyWeight app.  I've never really been much of a fan of weighing my food and counting the calories, but I now realise it's a necessary evil.  The app is fantastic though, allowing me to plug in my calories in vs. calories out, and this was today's pictorial evidence (and remember, this is in spite of my feeling like moving may well kill me):

Yes, you read right.  NEGATIVE 1354 calories.  Go me!  This app is motivating me more than I thought possible, counting my glasses of water, tracking my exercise (thank goodness I wear my FitBit every day), and most importantly, telling me how many of my 1200 calories I've had so far.  The only thing that would make it better would be if it cooked dinner for me...

So, where am I at?  I feel good.  Aside from the RA (obviously, but we all know he's a cantankerous piece of work at the best of times), I feel almost 'cleansed' for want of a better word.  Revitalised.  I'm awfully glad I gave up the caffeine last July though - I can only imagine how rotten I'd be feeling if I was going through caffeine withdrawal AND calorie restricting!

One day down - eighty-three to go!

PS  I have a FitBit Ultra, which I don't think retails in Australia anymore... but I cannot wait until the next product comes out.  The FitBit Flex is a wristband (and comes in teal, yay!) that does all of the fab stuff the FitBit does, but automatically syncs with your iPhone to keep you on track.  How awesome's that?!  Bring on Autumn, I say - I've picked out my "You're awesome for being so dedicated to the 12WBT" present already!

Change your view, change your world

I have a gorgeous friend who lives on the Gold Coast - mother of two, wife to a very busy husband and overall top chick.  She has bitten the bullet and completed a round of Michelle Bridges' 12-Week Body Transformation... and looks incredible.  

So this is my promise to myself.  I will do my best to make this work - I know 12 weeks may not transform my body, but hopefully it transforms my perception of it and helps me to lose some of the kilos that are not helping my joints.  I intend to change my habits, change my outlook, change my life.  Change my world.

The journey starts here...

The RA Map

Check it out (and feel free to add yourself) here.

The idea is that it will allow people close to you to get in touch, and provide support to one another through the journey that is chronic illness. 

Thought for the day...

Life envy

I read this article on Mamamia today and it really struck a chord with me.

Mia writes:

Do you ever get the feeling that everyone else is living their lives better than you? It’s that. The feeling that I should be doing more. Being more. But I’m not. I’m in bed with a large cup of tea and a small child snuggled under each arm. Finish line? My day hasn’t even started and already I have this nagging feeling of inadequacy. A quick glance at my Facebook feed often leaves me feeling the same way as the images whizz across my screen – overseas trips, music festivals, exhibitions, picnics, adventures, celebrations, restaurants, beaches, sunsets, parties…everyone’s lives loom so large.

Meanwhile, I go to work and I come home. Wait, sometimes I go to Westfield or the chicken shop.

And I hear you, Mia.

In a life where we are putting our "best face forward" on social media, it always seems as though our lives are less exciting, less full than everyone around us. 

I live life as a contradiction - trying to live a fast-forward life while actually moving in slow motion.

Steve Furtick was onto something.

Steve Furtick hit the nail on the head when it comes to "life-envy" - 'Don't compare your behind-the-scenes to everybody else's highlights reel'. And it is true - my world-travelling, fine-restaurant-visiting, bungy-jumping, mountain-climbing, extreme-sport-participating, fun-loving friends have wonderful things to post on FB and Instagram, but they don't live with chronic illness. They get to bounce out of bed each morning and start their day, where mine is more of a stretch-for-an-hour-before-feet-can-hit-the-floor-and-shuffle-to-the-kitchen-to-take-my-body-weight-in-meds start to the day. 

I, like Mia, go to work, and come home, with the occasional detour to the supermarket (or more commonly, to a medical appointment or the pharmacy). Of course my life isn't going to look as impressive on a highlight reel - but it's my life, my lot, and I accept it. The pangs of guilt and envy hit every now and again, but I'm not ashamed of my life in all it's mundane-ness. Because someone, somewhere, would kill for my boring, mundane life where I have a job, and a roof over my head. And that's all the highlight reel I need.

In 2013, I will...

Whenever a new year rolls around, we humans tend to make a heap of resolutions that, according to research, tend not to last even five days into the year.  Given it's the fifth, I thought it time to see how I'm going.

Resolution #1: Finish the coursework component of my Masters degree
Given I am still on uni holidays, this was rather an intelligent resolution on my part - I can't 'fail' at this for quite some time!

Resolution #2: Be kinder to myself
Well, this one isn't going so well.  I have a total of 4 days off in January, my first of which was today - and I am utterly exhausted.  Combined with the distinct lack of anti-inflammatories circulating around my system, my body is aiming to shut down entirely, irrespective of my work commitments.  Basically I don't think this one even made it 10 hours into the new year, working far too hard seems to be part of my DNA!

So on the resolution front, I'm running at 50%.  Unfortunately, everything pales into insignificance in the current crisis facing so many of my fellow Tasmanians.

We've had a heatwave here in Tasmania over the past few days - and sadly it has led to bushfires in the state's east and south.  Many homes have been lost, animals perished, but luckily, thus far, no human lives lost.

This photo was taken by Ian Stewart - fire is so beautiful, yet so devastating all at once.

Friends of our family have lost their home, their possessions, everything.  Other friends have evacuated and left their homes behind, hoping for the best.  For now it's a waiting game.  Waiting for the cool change to come, waiting for the rain, waiting for the luck of the Tasmanian people to change.  We can only hope.  And wait.  And offer what little help we can.  I hope the rest of the country joins me in opening my wallet and donating what I can, just as we did following the Black Saturday bushfires of 2009.

There are two appeals running thanks to the Bendigo Bank - one for the South-East Tasmania (eg. Dunalley, Forcett, Nubeena, etc) and one for the Bicheno fires.  I'm sure more appeals will come to light as time goes on, but all help is needed.  It breaks my heart to think of these people who have lost so much, who are tonight trying to get precious little sleep so that tomorrow they can continue to look for loved ones, continue to defend their properties, or try to begin the agonising task of cleaning up.  Tonight, all Tasmanians are heartbroken for them. 

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)

_________________________________________ 

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


_____________________________

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.