Things I love: Squeak Design

It's no secret that pretty things make your day better.

Squeak make beautiful silk scarves, bags, cushions, and my personal favourite, quilts. There's no denying the 'comfort' of my hospital bed could be infinitely improved with this beautiful, velvet-backed masterpiece! And they're even on sale... (no prizes for guessing which design and colour are my favourite!)

Better news is that you can win one of their beautiful overnight bags, just by heading here and popping in your details! Get over there now and support Australian design!

The Adrian Quilt in Teal is a personal fave of mine (and on my wishlist!)!

The Adrian Scarf in Teal is also sadly missing from my wardrobe...

You could win this bag. Get entering (link above)!

The very aptly named Peppy scarf... I feel peppier just looking at it!

Trapped

Chronic pain is not something I learned much about at uni - truth be told, I highly doubt a textbook or lecturer could have done it justice in a 200-seat theatre. There's something about the all-encompassing nature of chronic pain that really only lends itself to a practical learning experience.

I have been living in pain for almost 15 years now.

I haven't been keeping close tabs (that would be weird, even for my fastidious nature), but without any exaggeration, I could say quite safely in that 15 years there have been perhaps 500 days where my pain would have rated at less than a 4.

I consider myself to have a reasonable pain threshhold - I consider anyone who says their pain is an eleven out of ten to be a flat out liar; because in my book that kind of rating is reserved for someone amputating your limbs while you are conscious, giving birth and being paper cut all over and doused in alcohol handrub. You cannot say you are in that kind of pain, because you simply wouldn't be able to speak.

So believe me, when I say my pain is an eight, that shit is legit. Hell, I operate most days with a reasonable level of functionality at around a 5. That number requires regular pain relief, of course, but if I reserved my efforts for days when my pain was less than a 5 - well, kiss employment, socialising and life goodbye.

Over the past 18 months, my pain has gotten progressively less controllable, and taken over my daily existence. I've gone from being able to conceal the pain behind a mask and still be a functional human, to having far more regular days where this simply isn't possible. And yet I soldiered on - struggling with the same amount of analgesia but a bigger gap between the dose and the pain, and pushing myself to get through the working week, only to collapse into bed by 6pm Friday night and only emerge again at 6am for work on Monday. In short, my life involved very little living and a whole lot of painful existence.

But I finally had enough - I saw my rheumatologist on a day where I couldn't maintain the facade, and the decision was made to address my pain issues in a more comprehensive way. It is, without doubt, the single best decision  (in terms of my RA) I've made. It took almost two weeks as an inpatient in hospital, a lot of patience and a whole lot of research; but here I am, in the least amount of pain I've been in for many years, and feeling clear-headed and physically & emotionally lighter.

Chronic pain steals so much from sufferers. Don't suffer silently - speak to your doctor and be honest. Don't wait as long as I did to get your life back.

She Used To Be Mine (World Arthritis Day, 2015)

Sara Bareilles has long been one of my favourite singer-songwriters, and she penned a piece a couple of years ago that has recently been released as a single. “She Used To Be Mine” is the story of a woman who longs for the woman she used to be, before the world changed her. While I’m not a waitress, so much of the lyrics are almost word-for-word the lament I would sing to the girl I was before all of the illness, all of the trials, and all of the pain. Her words explain what this life is like better than I ever could:

Click here to hear Sara sing this beautiful song.

It's not simple to say

That most days I don't recognise me

With these shoes and this apron

This place and its patrons

Have taken more than I gave them.

It's not easy to know

I'm not anything like I used be

Although it's true

I was never attention sweet centre

But I still remember that girl

She's imperfect, but she tries;

She is good, but she lies;

She is hard on herself,

She is broken and won't ask for help;

She is messy, but she's kind;

She is lonely, most of the time;

She is all of this mixed up

And baked in a beautiful pie -

She is gone, but she used to be mine.

And it's not what I asked for

Sometimes life just slips in through a back door

Carves out the person and makes you believe it's all true

And now I've got you

And you're not what I asked for

If I'm honest, I know I would give it all back

For a chance to start over

And rewrite an ending or two

For the girl that I knew

Would be reckless, just enough

Who’ll get hurt

But who learns how to toughen up, when she's bruised

And gets used by a man who can't love

And then she'll get stuck and be scared

Of the life that's inside her

Growing stronger each day

‘Til it finally reminds her

To fight just a little

To bring back the fire in her eyes

That's been gone, but it used to be mine

Used to be mine

She is messy, but she's kind

She is lonely, most of the time

She is all of this, mixed up, and baked in a beautiful pie

She is gone, but she used to be mine.

Take a moment to remember the pain you felt when you rolled your ankle, or your knees after doing a whole lot of squats at the gym, or your feet after a long day on your feet at work. Now imagine all of those pains together, twenty four hours a day, seven days a week. In all those joints, plus your shoulders, elbows, wrists, hips, fingers, and toes. Imagine this is your life now. Every. Single. Day.

Imagine you are given a credit card with a $5,000 limit. Each step you take, costs you a dollar. A shower, $50. Getting dressed, $50. Cooking dinner, $50. Vacuuming, $100. Each hour you stay at work, $500. Your ‘credit’ is eaten up quickly, isn’t it? This too is your life now. Every. Single. Day.

Every day, I am in pain. Every day, I run out of credit. By the time I get home, I am lucky to manage to cook a piece of toast for dinner. But in a life  that pretty much consists of going to work, coming home, collapsing in bed, and doing it again the next day – it is my work that keeps me going.

In the past 12 months my will has been tested. Multiple new diagnoses (two autoimmune, and a couple of regular ones to keep me in touch with the ‘real world’), twenty-odd kilos to my frame, countless bruises, thousands of dollars in medical costs, and keeping most of this a well-guarded secret so as not to scare, burden, or disappoint the people I love.

But today, World Arthritis Day, it’s time to come clean. To remind the world that “young people get Arthritis too”; that it’s not just “a few aches and pains”; and that behind the smile and the assurance that all is well, sometimes we are crippled with pain – physical, and emotional. To celebrate the achievements and triumphs; to hear the stories of strength and courage of others who share our shoes.

Every kilo I have gained is not a weakness, but a sign of strength. They’re there, because instead of giving up when my body betrays me, I down the steroid tablets and carry on. Every bruise is a sign that instead of staying in bed when my body was barely strong enough to stand, I tackled the day head on (and somehow collected the doorframes and walls). Every dollar I spend to stay as healthy as I can manage is testament to my determination to get myself to work, and make that money so I can continue to be independent as long as possible. I may have days when I want to give up, but it’s the knowledge that giving up would be so incredibly out of character that keeps me going.

So today, to all the other people who make the decision each morning to fight like hell, I urge you to draw courage from the things you’ve already faced. I will put one foot in front of the other, and when I look in the mirror and don’t recognise the girl who stares back, I will take a moment to remember that she is the sum of all my experiences. She has been a passenger on the roller coaster of life, and has done her best to squeal with excitement more often than scream in fear. She is more than a medical record and list of medicine. She’s imperfect, but she tries. Today, and on all the days ahead, that will be enough. You are enough. We are stronger than this disease.

Twelve months on...

I've been thinking about posting for a while now - clearly I have been busy over the past 365 days! - I guess it was a combination of not wanting to look the gift horse in the mouth, and not really believing things were as they are. But more about that in a minute.

The past year has been a bit up and down - I contemplated reducing my work hours, realised I needed a second job to pay for medical expenses, finished a post-grad degree, peaked and crashed (many times over) courtesy of huge doses of steroids, and had one of the best weekends of my life as a bridesmaid in the wedding of two of my favourite people on the planet. If this disease has only taught me one thing, it's that it's the dips of the rollercoaster that let us truly appreciate the highs.

The newest high, though, has been a new drug. Stepping away from my monthly appointment with the infusion chair, and taking a tablet twice a day, has been liberating. Better still, it seems to be working brilliantly (so far, can't jinx it) and aside from some pretty horrendous nausea I am a happy woman.

So what next? Well, tablets mean I might finally get a break away from the chair to travel (once I accumulate some more holiday pay!); and I am really enjoying being less limited by pain and stiffness - the world is my oyster.

If this post finds you on the descent or the dip of your rollercoaster, hang in there. Some days I have wondered why we persist - but brighter days are ahead. New research leads to new developments leads to new opportunities - and you never know which one will come knocking at your door.

Rheumatoid Ninjas

You know how stealthy ninjas can be.

Turns out my RA can be just as stealthy.

After almost 5 months of perfect joint health, I was feeling a million bucks. I saw my rheumatologist, who declared me to be his little miracle. He was so darn excited that he had seen me a couple of months prior to my appointment, walking down the street, with the confidence and gait of a fit, healthy woman. I was back in the gym and feeling really good about making some positive changes health-wise. Oh, if only he could see me today!

So late last week, my left shoulder started to ache. The next day, my ankles felt like they were seizing up. By the following morning, my hips and neck were agonisingly painful, and my hands, feet, fingers and toes all swollen and excruciating. Boom. Without warning, it's as though my drugs have just forgotten to do their thing! By tonight, there is pretty much a 2% chance of my making it to work tomorrow. And that's being optimistic!

I've never taken my health - good or otherwise - for granted, but my word a flare is a whole lot harder to fathom when you've had a relatively good run! Nonetheless, the break from poor health means I have more in the bank to fight back. And fight I will...

I am made of magic things and the leftover fire of silently exploded stars.

I first discovered the incredible Tyler Knott Gregson's poetry on Pinterest - and I have since become a massive fan of his work.  This one in particular speaks directly to my soul, and so I wanted to share it with you.

The incredible words.  Tyler speaks from his heart to mine each and every time.

You can purchase prints of his beautiful poetry by following the links from his website, http://tylerknott.com/ where you can also see some of his incredible photography.

Progress report...

It's been a while since I checked in.  Life just gets in the way sometimes, you know?

So my trial of high-dose abatacept (now simply referred to as "miracle juice") was a roaring success.  My rheumatologist didn't even bother asking how I was feeling.  He said he saw me from a distance one day, and he just knew.  To quote him (as closely as I can from memory, anyway):

"I saw you walking down the street, and I smiled to myself.  Incredible.  Great posture, confident steps, head held high, smiling as you walked; looking exactly like a young woman should.  I've seen you shuffling your feet and walking with the gait of a 90-something year old woman; but the woman I saw that day was every bit the fit, healthy, confident young lady I always knew was in there, barricaded by your RA.  It's amazing the difference good treatment makes."

He was absolutely right.  The increase in dosage almost instantly made a huge difference - and now I don't feel so trapped by the disease.  It's amazing how much weight it puts on your shoulders, to have to carry the disease around with you day after day.  It robs you of good posture, confidence, and the sparkle in your eyes that people recognise as your healthy face.  But removing that weight - figuratively and literally - and being able to have enough energy to do things like go to the gym after work make me feel more like a person my age should feel!

So we carry on - because this is as close to the big R as I've come.  Sure, there are flares every now and again; and I'm certainly not going to insinuate I'm pain free because that would just be flat out lying - but I feel good, I feel relatively normal, I have had zero sick leave days in the past 6 months due to my RA, and I feel as though I finally have some semblance of control.  And after so many years of feeling as though I had zero control over my body and its tantrums, that's one heck of a turn around.  Thank heavens for new developments in drug therapy!

Has this ever crossed your mind?

I'm not much of a day-dreamer, but I have had nights where I dream I am pregnant.  I have blamed it on my being of an age where many of my friends are falling pregnant and having babies, and therefore it seems as though barely a day goes by there isn't a new announcement.  I therefore, through no fault of my own, have babies on the brain.

I've never gotten far enough in my dreams to see what the baby might turn out like - but I guess it goes without saying that I would hope for the perfectly healthy, perfectly formed baby all prospective parents want.  An Australian couple - this time pregnant with their eighth child - were no different.  They went to their ultrasound to hear a strong heartbeat, and see two perfect little feet on two perfect little legs, two perfect little hands on two perfect little arms, and two faces.  Yes, two faces.

A scan of the baby.

The baby is reportedly suffering from a duplication called craniofacial hyperhidrosis (or diprosopus) of which there have only ever been 35 cases recorded world wide.  The last known case of diprosopus was recorded in an Indian baby who was born – and died – in 2008.  The baby was born with two sets of eyes, two noses, two mouths but only one set of ears; meaning she could breathe normally, drink milk through both mouths and her eyes blinked at the same time.  However her life was short, when she suffered a heart attack and died two months after she was born,

In speaking to an Australian current affairs program when this story came to light a couple of months ago, it was revealed that the baby's parents have seven other children, survive on welfare and carer's payments, and her mother suffers from rheumatoid arthritis.

And in the article I read, I stopped.  I probably held my breath momentarily.

Rheumatoid Arthritis.

It's not like I don't read, hear or think of those two words most days anyway, but it dawned on me... there is a risk.  

I know, I know - there's always a risk of malformation or disability with any pregnancy, but after my first rheumatologist all but beat it into me that any less than two forms of contraception wasn't enough, I have had a healthy fear of the thought of an unplanned pregnancy for myself or anybody else on the likes of Methotrexate or Leflunomide.

Without knowing, judging or otherwise being negative about the couple, I only hope that they heeded the warnings surrounding pregnancy and medications.  I can't imagine the confusion and confrontation of being faced with a discovery like this - let alone if there was any chance at all that it could have in some way been avoided.

Because all babies deserve the very best chance at a healthy start to life.  This poor little possum won't be so lucky.

The battle against the pred pounds - 12WBT take two!

So no doubt if you have RA (or pretty much any other auto-immune illness, for that matter), or if you know someone with RA - you will have heard them simultaneously sing the praises and bemoan the side effects of prednisolone and/or prednisone.

Steroids are a mainstay of treatment of RA and other diseases like it; a double-edged sword for people like me.  In their 'pros' we have reduction of pain, reduction of swelling, improved movement, improved function, and general improvement in wellbeing.  The 'cons' column (and believe me when I say I'm giving you the summarised version!) includes insomnia, mood swings, depression, emotional lability (crying at the drop of a hat is my super-power!), constant hunger, fluid retention and weight gain.  And that, my friends, is just the tip of the iceberg of the short-term effects.  Don't get me started on the crazy manipulation of your body that it causes if you're on it long term!

Funnily enough, I (and many RA patients around the globe) have long referred to these little white pills as "Satan's Tic Tacs".  The irony in this is that the company that makes Tic Tacs has long used the ad line "Two hours of Tic Tac freshness in less than two calories.".  Satan's version, however - well those little $*#^@&! basically make people like me pack on the kilos just by reaching for the bottle they come in.  Not fun.

Actually printing those three little words on the bottle might prevent some lawsuits in the future for "failure to acknowledge likely outcome".

So, after receiving a full-length mirror for Christmas (I have carefully avoided having one since living in my current house for the past 3 years; I'm not sure whether my family thought I was putting together my outfits badly or whether they were concerned about my weight gain...) I have had to come to terms with the way I look now.  Sure, my work pants had become a little tighter - but I really didn't think I was in too much trouble.  Seeing the way I look now, in my before photo for the 12WBT - I was clearly delusional.

I'm one of those people who has always been a bit of a problem solver - see a problem, acknowledge it, fix it - and I couldn't very well treat my body and my health any differently, could I?  So I got online, pulled out my credit card and signed up for another round of Michelle Bridges' 12 Week Body Transformation.  The signing up was the easy bit.  The hard work was yet to come.

The before photo I mentioned before evoked a different response to the one I get when I look at myself in the mirror.  In the mirror, I find myself focusing on my face.  When faced with the photo, I can't help but take in the whole picture.  And while I try to be very open and honest on my blog, sharing the photo would be cruel to you so to give you an indication of how unhappy I looked, allow my friend to demonstrate:

Grumpy Cat is not impressed by what she sees.

But the clincher for me wasn't the way I looked in the photo.  The thing that got me to hand over my money and commit to another round was Michelle's announcement that this round would also mark the launch of her "Move" program - for people with movement and mobility issues, whether they be from illness, injury, having not done exercise for an extended period, or having a BMI > 30.  The promise of an exercise program that was actually within my capabilities was simply too good to pass up, and I'm not going to lie - it felt freakin' awesome to complete my workout this morning.  I did it - not a 'modified' version for the girl with the dodgy joints, or only completing selected exercises because of pain - I did the whole darn thing!  Talk about building a girl's confidence and her pride in her work!

As I type this and day one of my twelve weeks comes to a close, I am proud of the start I've made.  Under my calorie target, and having gotten out of bed at 5:45 am to exercise - I am impressed with my day one dedication.  The trick will be keeping it up from here - but if I want to look less like Grumpy Cat in 12 weeks time, I need to get it done.  Fix that problem.  Change my life.



I'll be checking in from time to time to report back on my progress in the 12WBT.  For information and to sign up to be reminded when future rounds begin, go to  www.12wbt.com - I'll be honest, the meals are great and now with this new exercise program, we have no more excuses!

Things I love: clean skin!

I've been a bit of a beauty buff my whole life - being on a first name basis with my dermatologist in my teen years, I have taken steps to ensure that my skin is as healthy and radiant as humanly possible ever since.  However, there are many nights since developing RA that I really struggle to motivate myself to wash my face, so I'm always on the lookout for products that help me do the things that 'normal' people take for granted.

Firstly, I discovered Ego QV Face Cleansing Wipes.  Available from all good pharmacies, they not only cleanse the skin and remove makeup (including stubborn eye makeup!), but they also remove oil, moisturise the skin and are still gentle enough for even very sensitive skin.  I use these daily - either on their own, or prior to the Rolls Royce of all home cleansing systems...

Which brings me to my single best investment of 2013 (because despite my loudly-professed adoration for the product, nobody has made me a brand ambassador just yet - so I had to buy myself a little present!).  Drumroll, please...

Introducing the Clarisonic Mia 2 - an ultrasonic cleansing brush that cleanses your skin SIX times better than your hands - and best of all, it only takes 60 seconds!   It also prepares your skin for better absorption of creams, serums and moisturisers; which means you use less of (and get more bang for your buck from) the things I have been known to splurge on.  I know it works in allowing better penetration of  your products - because the forehead lines I have been trying to minimise for about two years have all but disappeared in the 6 months I've been using my Clarisonic.  Can't get better evidence than that (and I truly wish I had a photo I could show you to compare!)!

While I would recommend starting with daily use, it's gentle enough to use twice a day, and has made my formerly "pretty good" skin utterly flawless!  It's not cheap (definitely an investment!), but I should add I haven't had a facial or needed to use any exfoliants in the 6 months I've had my Clarisonic, and my skin is the best it's ever been.  I've changed the brush head twice (once every 3 months), but that's really the only ongoing expense aside from cleanser.

The ultrasonic vibrations are really very tame, even on days my hands are flaring.  I do find my skin can get a little sensitive around flares, so at these times I only use my Clarisonic at night and with a very gentle cleanser, and I'm sure to follow it with really gentle moisturisation - but I am so impressed with this little gadget, I praise it high and low!  It also comes in a variety of colours (pictured above is the Sea Foam, which wasn't a difficult choice for me... if you saw my house you'd understand my obsession with aqua and turquoise!) but most are limited edition, so if you see a colour you love then my advice is to snap it up!  Each cleansing brush comes with your first brush head (I think they all come with the sensitive skin brushes, but I could be wrong); as well as with a travel case, charger and cleanser sample.

If you want better skin - then trust me, this is a good investment!

Wishing for a cure.

I've been absent from my blog for a little while for very good reason - I thought I was getting close to the big "R" and didn't want to jinx myself by talking about it.

By "R" I don't mean retirement (though I won't lie, if I won the lotto tomorrow I'd think about it!), but remission.  It's what we all aim for in going through the various treatments, and I know that to rheumatologists it's a sign of a job well done.  I thought I was nearly there...

I re-started my abatacept infusions in the first week of December.  Due to some weight gain, I was approved for a higher dose, meaning that instead of 5 mg/kg/month that I was getting with the subcutaneous injections, I am now doubling that and getting around 10 mg/kg/month.  If you're not science-y minded that might not make a lot of sense to you: the gist is that I am now getting twice as much drug each month, and theoretically that may have been my problem before - not so much that the drug wasn't working, but more that I wasn't getting enough of it to do what it needed to do.

So about 2 weeks after my first infusion, I woke up and got out of bed without thinking about it one morning.  Anyone with RA will tell you that mornings like that simply don't happen anymore.  I got up and got halfway to the kitchen before I went "Good lord!  What's going on here?!".  I felt - and looked - healthy for the first time in what seemed like 2 years.

This feeling of well being lasted through the festive season and into 2014, with my second infusion topping up the good work of the first one.  It wasn't until last night, after almost 11 hours at work and a couple of hours in the kitchen that my body had a little hissy fit.  This morning my joints groaned and protested as I tried to bounce out of bed as I have done for a few weeks now.  To be perfectly honest, it was like rewinding the clock back to the days before I was diagnosed; with the stiffness and pain reminding me that remission is still a little way off.  It served to proved to my colleagues - some of whom are obsessed with the weather's association with my disease activity - that sometimes my body just flips me the one-fingered salute irrespective of everything else in the universe. and I have to carry on as best I can.  

My little taste of health has been enough to whet my appetite, so I'll be continuing to do everything in my power to get me some more of it's deliciousness.

_____________________

I went to school with a guy named Stuart, who was one of those people I envied immensely - he was incredibly intelligent, was shown/taught something once and he knew what he was doing, and he had a fabulous sense of humour with it.  Once we left school and went to uni to do our respective Bachelor's degrees, he decided to kick it up about a hundred notches and start his PhD.  It may not sound much, and at the time I didn't think much  of it, but I learned later on that it was just another way our lives ran in some kind of parallel - his PhD topic was an aspect of research in Ankylosing Spondylitis.

We caught up a few times for a beer whilst we lived in the same city, but Stuart was always too big, too smart, too bright for Australia.  He moved to the US where he was working with one of the top research laboratories in the world, when he passed away at the age of 31.  Despite his 'living the dream', it turns out there was more to his brilliant mind than he ever let on.  We weren't particularly close, but I found myself crying awful, ugly tears when I heard the news.

I'm not sure who will cure me now, Stu - but I know you'll be dropping hints to the less-intellectually-gifted researchers you've left it with.  May you  find perfect peace now, with football and beers and some good jokes to tell Uncle Rudi.  Much love.

Pain in my... Well, everywhere.

Today I am confined to bed. The thought of moving anywhere is beyond me, even rolling over seems to be a tall order.

I don't know where the latest pain has come from. My spine is taking the worst of it, with my hips and knees following in sympathy. Every movement, every step is sheer agony. The kind of pain that makes you want to vomit. The kind of pain that reverberates through your body and holds you captive.

So today I will lay here with heat packs and pain killers, trying to move as little as possible, struggling to get comfortable. Days like today I am truly thankful for all the days I manage to get out of bed and get on with my life. 

Perhaps the RA just makes me stop on these days to maintain my perspective. Or maybe I'm just too optimistic to think bad things, even about a disease that indirectly controls my life.

Things I love: CND Vinylux

My friends have long been coming to me to ask my opinion on various bits and pieces in the beauty genre.  Hopefully not because they think me a vain, image-obsessed woman (actually, my friends are very down to earth so I doubt they'd let me get away with that kind of thing!) - but as one pointed out, "If there's a new product/gadget out to make life easier or do something better, (I will) know about it and probably already have invested in it!".  Truth be known, they're not far wrong...

So my focus product for today is CND Vinylux.  Made by the people who revolutionised nails for women worldwide with Shellac, Vinylux is applied and removed just like any other nail polish, and lasts for seven days if applied correctly.  Yes, you read that right.  SEVEN DAYS.  It's the look of a gel polish, with the flexibility of a regular polish.  

The Vinylux colour chart - oh, how I wish I had all the colours.

The colours are the same as those in the Shellac range - and the best part is it covers the spectrum remarkably well!  Sure, it's not quite as plentiful a choice as OPI (by far my favourite regular polish), but there's enough options that it keeps even fussy fussy people like me happy!  

My favourite everyday colour is Romantique, a beautiful pale pink which with 3 coats looks luxurious and opaque, and sometimes I layer Beau over the top for a little bit of shimmer.  I love Gilded Pleasure - I call it my Christmas Beetle colour and it never fails to get comments when I wear it!

This is a Christmas Beetle.  You too can have nails this gorgeous with Vinylux!

I have a wishlist about 20 colours long, but am adding slowly to my collection.  I love being able to get such long lasting results from a polish that's as easy to apply as it is to remove, and continue to distract people from my hands by having pretty, pretty nails.  

If you love nail polish as much as I do, check out Vinylux - if you're not ready to invest just yet, see if your local CND salon has Vinylux and can give you a trial run.  Believe me when I say it'll only take one application and you'll be hooked!

Thirty things...

It's Invisible Illness Awareness Week - but don't worry if this is news to you.  It's an awareness week that hasn't caught on in Australia just yet, outside those of us who have invisible illnesses.  Give me twelve months... I hope to change that!

Anyway, one of the activities was one I've done before - sharing thirty things that other people may not know about my invisible illness.  While it's not a new thing for me, I decided I'd answer the questions again (you can find my answers from 2012 here) and see what another 12 months living with my mate Arthur had taught me.

Read others' thirty things and submit your own by visiting http://invisibleillnessweek.com/submit-article/30-things-meme/ - it shows that out there in this big, wide world there are people living scarily similar lives to our own!

1. The illness I live with is: Rheumatoid Arthritis.  At least, that's my primary diagnosis!  There's some elements of other autoimmune diseases that creep in there from time to time, but RA is the major enemy in the war.

2. I was diagnosed with it in the year: 2003.  I was in my third year of uni and had no idea exactly what was in store!

3. But I had symptoms since:  In hindsight, 1996 - but nothing so serious that I would have done anything about it.

4. The biggest adjustment I’ve had to make is: learning to let go of my pride and asking people for help, and acknowledging my limitations!

5. Most people assume: I must have a very mild version of RA, given how rarely I let it get in the way of my life.

6. The hardest part about mornings is: lifting off the doona, and knowing exactly how having my feet hit the floor will feel.

7. My favorite medical TV show is: still Grey's.  Always Grey's.

8. A gadget I couldn’t live without is: my Kindle.  I didn't realise exactly how much I was avoiding reading (one of my favourite ways to relax) as a result of the pain in my hands and wrists. 

9. The hardest part about nights is: positioning myself in bed in such a way that I can get comfortable enough to sleep.

10. Each day I take __ pills & vitamins. (No comments, please) Over 30.  Add to that injections and eye drops, and we're getting into dangerous territory! I'd have a lot more free time if I wasn't trying to keep up with medication!

11. Regarding alternative treatments I: acknowledge that many things have their place, but still believe they should only ever compliment prescribed therapies.

12. If I had to choose between an invisible illness or visible I would choose: (I should add, I checked what I wrote last year, to see if my feelings had changed) Invisible - on the days I feel good, I hope that people can forget that I have RA when they look at me.  Other days I would say visible.

13. Regarding working and career: I'm way too ambitious and driven (not to mention stubborn) to let a chronic illness diagnosis get in the way of my plans.

14. People would be surprised to know: that I set my alarm for a couple of hours before I need to get up, so I can be stretching in the warmth of my bed and be able to move when its time to get going for the day.

15. The hardest thing to accept about my new reality has been: that it is, in fact, my new normal.

16. Something I never thought I could do with my illness that I did was: relocate myself to a different state, get a new job and live thousands of kilometres away from my support network.  As my disease progressed, I had to acknowledge that I needed those people closer to me, and moved myself back home.

17. The commercials about my illness: don't make it to Australia - I'm not sure if this is a good or a bad thing!

18. Something I really miss doing since I was diagnosed is: make music.  I said it last year, I'll say it again - I miss being able to express myself through music.  Now my hands won't do what they are told, it seems as though I've lost a big chunk of my identity in the process.

19. It was really hard to have to give up: netball!  I'd kill to be able to play again!

20. A new hobby I have taken up since my diagnosis is: commentating motorsport.  Fell into it by accident but actually really enjoy it - on the days my cricoarytenoid joint is behaving itself!

21. If I could have one day of feeling normal again I would: start the day by rolling straight out of bed - play music all day, and play and umpire a couple of games of netball at night.

22. My illness has taught me: to celebrate the little victories.

23. Want to know a secret? One thing people say that gets under my skin is: "You're limping.".  Stating the obvious doesn't achieve anything, and in fact it reminds me that I'm not doing so well.

24. But I love it when people: show genuine thoughtfulness.

25. My favorite motto, scripture, quote that gets me through tough times is: "A true optimist never lets life get in the way of living."

26. When someone is diagnosed I’d like to tell them: don't be too proud to ask for help.

27. Something that has surprised me about living with an illness is: how exhausting it is.  All of the things that once came very easily now suck the energy from me in no time at all.

28. The nicest thing someone did for me when I wasn’t feeling well was: cook for me, come over and do a little bit of cleaning, and by doing this made me feel less guilty for not doing any of it myself.

29. I’m involved with Invisible Illness Week because: I can't top my answer from last year.  If there was more discussion about invisible illnesses, then those of us with them might start to feel less invisible.

30. The fact that you read this list makes me feel: proud that our voices may one day be heard.

Move it, or lose it - sometimes.

Even after eleven years, I am still learning new things about this disease.  I am constantly learning new things about the way it affects my body, and what influence the things I do has on my body.

I've heard many, many things about the influence of diet and exercise.  Apparently going vegan has its benefits - but of all the things in my life, food is where I derive the most pleasure.  So going vegan is out.

Exercise.  Not one of my favourite things to do.  Well, since netball and tennis were lost to me, anyway.  But I have learned that when my body is reasonably good, the best thing I can do is to keep it moving.  Even when it's turning bad, and going downhill, my body needs to keep moving as much as possible in order to keep it moving.  Even sitting down for a lunch break is bad news!

It surprises me, now that I know I need to keep moving when I'm able, that at some point the only way to get any relief is to stop.  Stop moving altogether - to the point where leaving bed is limited to using the bathroom and getting a drink from the kitchen.  Sometimes I find it incredibly difficult to know which way to go, whether to make myself keep moving, or to admit it's time to stop.  

Oddly enough, my chocolate baby knows.  Her super-kitty sense seems to know when it's time for her mummy to stop - instead of kneading me, or taking forever to settle, she simply snuggles into my lap and will lick at my hands or feet if the joints are inflamed.  If she does this, she wins (as she gets a mummy at home all day who is capable of little more than cuddling) - but funnily enough, she only does it when I am on the brink of carrying on or calling it quits.  Pets are funny little creatures - they know what's going on, and certainly do their best to "help".  

So tonight, as I have been typing, my kitty companion has been curled on my lap between my tummy and the laptop - no movement, just curled up and content.  Question is, how will she wake me in the morning?  By using me as a human trampoline or by licking my hands?  I think I'll leave my fate up to my furry barometer.  She never lies.

Sometimes it's about more than your physical wellness.

This weekend, as the first of the few weekends I have free of assignments, I have taken the time out that I should have taken months ago - and definitely on a regular basis.
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nour·ish  [nur-ish, nuhr-] verb (from dictionary.com)

1.  to sustain with food or nutriment; supply with what is necessary for life, health, and growth.
2.  to cherish, foster, keep alive, etc.: He had long nourished the dream of living abroad.
3.  to strengthen, build up, or promote: to nourish discontent among the workers; to nourish the arts in one's community.

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Nourishment is not as simple as eating a macrobiotic, organic, fruitarian diet (though that doesn't sound very simple to me!).  Nourishment is as much about nutrition as it is about nurturing, and fostering a state of well-being.  And frankly, this weekend proved one thing to me - that I need to take better care of myself.  Not better care of my medical conditions, or my waistline - but me.When I was trying to work out how I achieved this, I googled "nourish your soul".   I found a great article here, which gave these tips to nourish yourself:

Seek out beauty.  Whether you find beauty in nature or in a gallery, take some time to actively seek out beauty and inspiration.  Practice being fully present and taking in the good.
Find a new book that feeds your soul.  Spend some time browsing in a bookstore and seeing what calls to you.  Find a beautiful, peaceful place to relax and read.
Turn off your computer and television for an entire day.  We often don’t realise how much the media influences our consciousness until we have some breathing room.
Do something out of the ordinary.  Visit a new part of town that you’ve never seen before. Try out a new yoga or dance class.  New influences and experiences spark our creativity and feed our soul.
Say NO to something that is draining your energy and distracting you from what is really important.
Beautify your home. Do some early spring cleaning & make your living environment as comforting and calming as possible.  A clean, beautiful environment supports a clear, calm mind.
Write in a journal. Spend some time in dialogue with your soul.  Making time to listen to our inner wisdom often leads to new insights and a broader perspective.
Take time to do nothing but relax. Take a hot bath with essential oils.  Light some candles.  Listen to your favourite music.  You deserve it.

Funnily enough, these were almost exactly the things I did this weekend.  Nourished myself by indulging in some good food, good wine and great company, getting some vitamin D whilst taking a walk with a friend, laughing with old friends on one of our all-too-infrequent catch-ups, and taking some alone time to rest, relax, recuperate and prepare for the week ahead.  I had a (little) spring clean - I am all too aware what a toll cleaning and cooking takes on my body! - lit some candles around the house, and spent the afternoon on the couch with my kindle.   I spent the lion's share of the weekend without my computer on - after weeks of it barely being off. 

Sage advice, right there.

I had a fantastic weekend - though they are never long enough, I feel as though I have nurtured and nourished my soul enough in the past 48 hours to get through another week.   And though my body may not be at its best, I feel as though I am in the right head space to conquer the challenges that the next few days will bring.  I head into another Monday with a smile on my face, a song in my heart - and a promise to myself that I will take the time to nurture my soul on a regular basis.

When people care... too much.

I am a very lucky woman. 

Despite working for a very, very large employer, I have a wonderfully supportive group of people around me. They do their best to understand and support me through my journey with RA.

But sometimes I have days when I wish I hadn't told anybody.

Then, on the days I walk with a limp, I could blame the gym.  On the days I wear gloves, I could blame poor circulation.  On the days I am in incredible pain, I could blame a overly-physical game of mixed netball.  On the days I am exhausted, I could blame a late night.

Instead, on the days my body is at odds with my mind, everybody is acutely aware of the why.  Then, because they care, they offer suggestions.  Like "why don't you take (new position), it'd be better for you.  You know, a desk job.".  Or "You look really exhausted, why don't you think about cutting back your hours to something more manageable?".  Or "You really should take a holiday.  You look like you need a break.".

The truth is, none of these suggestions help.  They hurt.

Am I doing my job?  Am I doing it well?  Am I in any way not performing to standard?  Has someone expressed a concern that I am incapable of doing my job?  Have I made a mistake that could have hurt someone?  If the answer to any of these questions suggests we have a problem, then we should talk.  But until that is the case, I am doing my job.  My current job.  The job I enjoy and love, and, to be perfectly honest, am bloody good at.

I am acutely aware of the fact that my body will one day decide that it has had enough of my pushing it to its limit on a daily basis.  I am aware that the career I have carved for myself will have to be abandoned in favour of my failing health.  I am fully aware that my brain will well outlast the chassis in which it lives.  I do not need reminding of this, and I do not need to be pushed in that direction prematurely.

My recent experiences reminded me of a number of other things that "healthy people" shouldn't say to people who are chronically ill.  They include:

You don’t look sick.  You don’t look insensitive, either.  This is never a compliment, no matter what tone it is said in.  I don't need to justify my illness.
There are other people who have it way worse than you.  Thank you, I am very well aware of that.  I do work in an Intensive Care Unit.  This doesn't make me feel better, and in fact, makes me feel as though you are dismissing my illness.
Why can’t you just do (insert something here)?  Because I can't.  I have this conversation with myself this all the time, “Grit your teeth and just do it. Why can’t you just (exercise/work more/do something after work instead of going home and going to bed etc)?”. Imagine how badly it hurts when someone else says it.
It’s all in your head.  I beg to differ.  I have a number of doctors who have told me it's all in my body.
Stop feeling sorry for yourself.  I’m not.  But I won't deny I have a feeling of loss.   Does it surprise you that I miss being healthy and happy?  It shouldn’t.  I need time to feel sad and come to terms with the door to a part of my life closing.  I need time to get used to the new normal.  And yes, we are almost ten years down the line but I am still coming to terms with my normal on a daily basis.
You need to think positive.  Believe me, I wish it were that simple.
Oh, yeah, I have a really bad knee/ankle/shoulder.  I'm very sorry to hear that - however there is a good chance your sore joint is going to repair itself with time.  My joints are attacking themselves from the inside.
You just need more sleep.  I live on the few precious hours sleep I get at night.  But when you can't sleep for pain ("painsomnia", it's good fun) or because the medications you are taking leave you too hopped-up to get to sleep, no amount of desire to sleep will get you over the line.  Honestly, if only we could get each day to be 36 hours long, then I could sleep for 24 hours and still be functional for 12.
You’re always too sick to hang out. Stop being anti-social.  Believe me, I would much rather see my friends than collapse in bed at the end of each day - but there is a limit to what I can manage in a day on minimal sleep.  If people don't understand this, then they're not my friends.
You just need to take your mind off being ill.  Fantastic idea.  If we have a time machine and I can go back to my life before my diagnosis for 24 hours, that might just do the trick.
You need to be strong.   Actually, no I don't.  Who do I need to be strong for?  Being ‘strong’ to please others?  I don't feel the least bit guilty about having bad days.
Maybe you need to improve your diet.  My body is a temple.  I wreck it with awful toxic drugs, and I try to undo as much as possible by eating healthily.  Again, if I could cure myself by eating a raw, macrobiotic, organic, vegan diet - I'd do it in a heartbeat.
My aunt had your condition and she got better.  I'm thrilled for your aunt.  However, just like our fingerprints, we are all different.  My disease may be more severe, or more relentless.  Unfortunately one person being cured doesn't mean a cure for everyone.
You’re sick, again?  I apologise.  It's kind of an inconvenience to me too, you know.
No pain, no gain.  I'll give you a tip: chronic illness is not like being a sports-person or having a bikini wax.
Are you sure you should be taking all these medicines?  Well, given I'm a) sick and b) a pharmacist, I'm going to go with yes.
You just need to drink more water.  My three litres a day is suddenly insufficient?
I read somewhere that they are curing your disease with **insert bizarre remedy here**, have you tried it?  Unless you are a researcher and you are offering me a place in your trial, I’m sorry but I can’t take the suggestion of unicorn hoof capsules/flying pig feathers/fairy dust infusions seriously.

Recent history suggests I am not going to be free of this battle for a while, but I intend to fight it like I fight RA: with grace, persistence, wit, intelligence and determination.  And I will fight like hell.

My daily dilemma -- and my new favourite quote...

Learning is a gift.

Unexpected compliments...

Apologies firstly for my slackness... it's been a while between posts, mostly because I have started to forego sleep in favour of increased hours in which I can study, and despite my unusual aptitude for procrastination, I have been quite good at keeping my eyes on the prize!

Last weekend I was in Brisbane for a seminar for work.  Two days of lectures, sitting in the one spot for 8 hours a day, and a LOT of information flooding into my brain.  Add on the travel and the many, many sleepless nights that preceded and followed, and I can assure you I have spent the vast majority of this weekend asleep.

But while I was away, I was paid an unexpected compliment, which I felt was worthy of a blog post.

I lived in Brisbane for a while a few years ago, and made some wonderful friends there.  I miss them dearly and take any opportunity to see them whenever I'm in town - so Friday night I caught up with one of my absolute favourite women in the world for a spot of late-night shopping (ahh, how I love the Queen Street Mall on a Friday night!) and dinner.  We shopped, I squealed with delight when I found the Leona Edmiston dress I had been coveting for three months discounted by 50%, with a further 30% off (basically free by my calculations), we ate dinner at a cafe in the mall and listened to some great live music, before we hugged goodbye and went our separate ways.  On my way back to the hotel I decided I would drop by the supermarket to pick up some bottles of water ($6/bottle in the minibar was a little too outrageous for my liking), and on my way out of the plaza saw a walk-in massage store.  

Now I'm very picky about who I let massage me after the spinal fractures and ever-worsening RA, but I met the therapist and felt instantly at ease.  When I explained my 'limits' he not only understood but went one step further, asking which joints were no-go zones today based on pain.  Now, without trying to recreate the zen (and a little pain, but the good kind) he managed to unleash, let's just say that while I was incredibly sore beforehand - strange bed, long flight, one day in lectures - I walked out a completely different woman.  But before he was done, he massaged my arms (I blame all the computer work I had been doing for making them feel like my bone marrow had expanded... the pain was unlike anything I've experienced before, and I still can't find an accurate way to describe it) and while I thought I may die from the pain, I knew it was doing me the world of good.  The most medicinal part of it, however, was not the massage.  It was his words, when he uttered "My goodness, you have the most beautiful hands.  So elegant, like a musician.".  

A long time ago, before all of the pain, before all of the inflammation, before all the medication and doctor's visits and appointments with physiotherapists and massage therapists, I was a violinist, saxophonist and self-taught pianist.  My long, slender fingers instinctively found their way around musical instruments as if they had never known any different.  To this day, I can hear a piece I once played and my fingers and hands will move - position changes, vibrato and all - through the sheer power of muscle memory.  

It's been a long time since anybody called my hands beautiful.  Like many others with RA, my hands were among the first joints to experience RA symptoms, and came a very close second to my toes as the visible manifestations of my disease.  They are now ravaged by RA, swollen and red, with nodules and with fingers that don't exit the palms at the same angles they once did.  My nails are thin and brittle, always cut short to avoid them being long enough to bend and break.  The skin on my hands is stretched tight from the swelling, with fissured surfaces where the skin has stretched and torn.  I have long looked at my hands and seen ugliness, a visual representation of my pain, and felt a frustration and despair at the things they can no longer do.

But this man took one look at my hands and exclaimed that they were the most beautiful hands he had ever seen.  I have spent quite a bit of time since examining my hands, trying to see what he saw.  Then it dawned on me.  I can't see the beauty that others can see, because I still remember my old, perfect hands.  I can, however, appreciate the incredible things that my imperfect hands still achieve on a daily basis.  Where once opening a jar was considered pedestrian, now it is a sign that I am still winning.  My hands still produce beautiful penmanship (even if the pen has changed), they cook delicious food, they keep my house clean, they care for my fur-child and they help me to apply some artistic flair to my face each day so my best face can be put forward. 

To him, my hands were beautiful - to me, they are utterly breathtaking, and I will never stop being amazed.

Not my hands, but infinitely incredibly hands nonetheless.