Dear Christine

I lay in bed and read your book cover to cover. I couldn’t stop reading, for I felt as though I were, for the first time, reading a real story. A bit like Harry Potter changed the life of many young people who had never wanted to read before, your story was a breath of fresh air. I am so appreciative of your honesty – about your childhood, your love affair with Shelly, your disease – and in awe of how long you hid it all from the world, from a world where the way you look, walk and talk is everything.

I admire your courage, and feel as though we have so much in common. While I’m very open about having RA, there isn’t a person on the planet who knows the extent of my pain, my discomfort, my limitations. I hide it from everyone in my life on a daily basis, put on my ‘sparkle’ and radiate positivity so that nobody knows how devastating it truly is. At the moment, however, I am in bed, as I’ve been continuously flaring for almost five months.  I refuse to admit to anybody that I’m in trouble, because I still hold out hope that the next drug will be my miracle, and I will be able to return to the life I so carefully created for myself. Now I’ve read your book, I know this would make perfect sense to you!

I am going to lend your book to my close family and friends, starting with my mum. I hope that they read your story, and perhaps recognise some of the traits and symptoms you describe as my own. I hope that more high-profile people come forward and speak out about having RA, because it certainly does need a makeover – and the world needs to know that it’s not necessarily old, wrinkly people who get struck. It’s women like us – young, fit, healthy, fashionable (you more so than I!), fun, vibrant and driven – and it has the capacity to take away far more than the integrity of our joints and the high-heels section of our shoe wardrobe.

Thank you again for having the courage to speak out, and making girls like me feel far less alone. More power to you, Christine.

Much love,
Me.

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Christine Schwab's book "Take Me Home From The Oscars" is available from all good book stores, and is definitely a must-read for anyone who has, or loves someone who has, RA.  Her website is home to her blog and others goings on, and also gives links to her Facebook Page and her other awesome books!

  

RAW History: my diagnosis

In the RAW History posts, you'll find my story.  Mostly for my own catharsis, but hopefully to let others know they're not alone.  RA is a cruel, insidious disease and everyone's journey with it is different, but there are so many elements of it that are common to us all.  

_________________________________________

What doesn’t kill you makes you stronger.

It’s a well-worn saying, trotted out by well-meaning people at difficult times to make people who are on the receiving end of bad luck or bad times feel better.  Hell, Kelly Clarkson even made a hit out of it.  For the first twenty years of my life, I thought it was a bit of a cliché – that was, until I heard the four words that changed my life.

“You have rheumatoid arthritis.”

Now, most women (myself included) hope for three little words – “I love you” – and then the four little words – “Will You Marry Me?”.  The four I received from my doctor weren’t entirely unexpected, neither were they completely unwelcome.  Nonetheless, they weren’t exactly my four words of choice at the ripe old age of twenty. 

I distinctly remember the time leading up to my diagnosis.  I was studying at uni, had a great group of friends, and spent more time working than partying.  My friends and I would play netball every Wednesday night, with our win-loss record more of a comedy than a tightly-gripping drama.  In spite of that, we had a great time running around after the ball and the compulsory social session that would follow.  In our early lectures each Thursday morning, we would compare war wounds – bruises, cuts and grazes – and moan and groan our way through the day.   I blamed “getting old” for the fact that my knees were perpetually swollen and stiff, and given how bad I knew netball was for ankles and knees, I’d never really considered it to be anything but the side effect of exercise!

My first exam of first semester was Toxicology, and I remember feeling awfully under prepared.  So when my hand started to spasm around half an hour into writing time, locking it in position and leaving me unable to hold the pen, I wrote it off as exam nerves.  When they didn't unlock, and I realised that even my left (non-writing) hand was swollen and stiff as well, I figured I should get it checked out.  I went to my GP, who examined the swelling in my hands, drew some blood, and prescribed me a strong anti-inflammatory.  Despite knowing better, I took the medication on an empty stomach, and proceeded to vomit my way through my next exam.  Not ideal, but as I recall I still managed a distinction on the paper... probably one of my more focussed efforts, despite the distractions!

I’d finished exams by the time all of my bloods had returned.  I remember sitting in the chair opposite my doctor, as he turned to face me, leant down and took my hands.  Then he said the four words that changed my life – “You have rheumatoid arthritis.”.  To be perfectly honest, I didn’t feel the Earth shift, or the wind change, or even the clouds cover the sun.  The words came out of his mouth like an apology, a commiseration – but to me they were a validation.  It was so easy.  I’d learned about RA in class, I knew I had relatives with it, and I knew I had all the classic signs before I first went to him with the symptoms.  There are people who go undiagnosed for months, or even years – my journey was like taking a Concorde instead of a fixed-wing aircraft.  Quick, but not entirely painless.

My doctor called in a favour with one of the rheumatologists in town, and got me an appointment quick smart.  Unfortunately, the rheumatologist I had was a bit too old-school for this forward-thinking, knowledge-seeking pharmacist, as he threw every trick in the old, leather-bound book at me.  Being a child of the computer generation, I researched the latest and greatest treatments as he continued to clutch at straws with hydroxychloroquine and gold injections.  I struggled terribly with methotrexate - vomiting for five or six days at a time after my dose, with my stomach having perhaps one good day before I would have to dose again.  We switched to injections, and with my terrible needle-phobia I would feel physically sick all day when I knew my injection was coming up.  I became a puffy, moody mess on prednisolone, and the longer I struggled with the pain and stiffness, the less positive I became about RA.  My poor housemate watched me struggle to climb the stairs to the bathroom, and would put up with my short fuse and emotionally labile self.  From being relatively OK with the diagnosis to feeling completely at sea with a disease eating me alive, I couldn't motivate myself to get out of bed in the morning.  The pain was excruciating, the stiffness unrelenting, and my emotional state beyond repair.

A couple of years later, I finished university and started my first full-time job.  I moved back to my home town, and given the meagre pay packet I took home each week, moved back in with my parents. I was an intern pharmacist, on my feet all day, working 40 hours a week and studying another 20 or more.  I had no energy, but knew I had to complete my board hours in order to be fully qualified.  I would drag myself out of bed each morning - or, on occasion, call either my mum or dad to help me - and get myself to work.  There were plenty of days I shouldn't have bothered, but I didn't want to risk coming in under my board hours before my contract was up, or lose the chance of getting a permanent contract once the year was up.  I've no idea how I did it, to be perfectly honest.  I got to the end of the year and breathed a huge sigh of relief - but still, the RA kept progressing.

When I asked my rheumatologist about biologicals at my end of year appointment, he told me that they were last-chance treatments for "when you're crippled".  My response to that statement was as simple as it was quick - "I thought the whole point was not to get there?".

Thankfully, that wasn't the end of my story.  Five years I had struggled, not knowing that I had the power to choose my doctor, to choose my fate.  It wasn't until a few months later, when I was thrilled to discover my new, previously un-serviced home, was soon to be home to a rheumatologist with a reputation for being a bit of a cowboy.  Just my kind of medico.

My first appointment with Dr G was pretty straightforward.  I can recite, verbatim, the opening part of our conversation.

Dr G: “Nice to meet you, what is it you do for a living?”
Me: “I’m a pharmacist at the hospital.”
(He  reaches out to examine my hands)
Dr G: “What have you been on so far?”
Me: “Methotrexate, Prednisolone, Leflunomide, Hydroxychloroquine, Gold injections…” (trails off)
Dr G: “Pfft.  How do you feel about biologicals?”

It had taken five years to get there – and in under 30 seconds he had worked out that we’d been wasting time and I desperately needed the good stuff.    It was like the relief of being diagnosed all over again – a weight off my shoulders, and given we could stop pred, a weight off of my weight!

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So that's the first five years... in a very, very abbreviated form.  While the diagnosis was swift, the road to a functional existence wasn't.

Dear RA (an open letter to the other half of this parasitic relationship)

Dear Rheumatoid Arthritis,

We've been officially seeing each other for eight years now, and I feel as though our relationship is on the rocks.  We've had some alright times in there (I'm not ashamed to admit they were the times you gave me space and let me do my own thing), but lately you're suffocating me, the way you are around all the time.  I think it's time you and I had a little chat.

You need to let up, just for a while, because I can't take much more of your neediness.  You're confining me to my bed (mean), requiring I take a lot of meds (mean) that make me grumpy (mean) and fat (there are no words for how mean that part is), and keeping me from work so I am not earning any money (mean, nasty and quite unsustainable).  Just quietly, I've been supporting you for as long as I've known you, propping up your doctor's bills, medications, physio, massage, chiropractor, pathology bills, MRIs, X-rays, health insurance, the whole lot - and now that I'm not earning money your expenses aren't going away.  I don't see you contributing to the household in many ways, other than making me feel bad, and it's starting to wear a little thin.

I really need to get my life back ASAP because I have things to do.  I have a seminar coming up that I've been waiting to go to for two years, and I need to be able to sit in the one spot for 10 hours a day without popping so many pills I don't absorb any information.  I have weddings to go to - and if it's not bad enough that I'm the token single girl at these things, I'd prefer not to be the token sober-but-narcotised single girl as well.  I have to be better so I can put my paws up at Lady Gaga's Born This Way Ball, because let's face it - we fabulous ladies with autoimmune diseases have to stick together.  Last but by no means least, I'd also really love for my body to feel like taking a walk every now and again, so I don't greet my thirtieth birthday swollen, fat, grumpy and with a rubbish attitude to life - oh, and I'd like to be able to dance to a couple of songs that night, too.    

I know my requests are entirely selfish, but I feel as though you're being a little selfish in requiring me to ask.  I'm not looking for an easy out - I know we're together for the long haul, it's been nothing but a committed relationship so far - but I'd really appreciate you giving me some time to myself, some breathing space, so I can get my head and body back in the game to deal with whatever life throws my way next.

Sincerely,
Me.

So, you come here often?

If my bed could talk, this is the line it'd use.  

I'm camped out again, propped up in bed with my laptop and TV remote control.  The brain fog is thick, the pain is limiting me to about 5 words of typing at a time, and I'm that awful mix of exhausted-from-lack-of-sleep/wired-from-corticosteroids.  I would kill for Thai takeaway and a serve of Cold Rock Choc-Hazlenut Icecream with Hot Chocolate Fudge and Ferrero Rocher mashed into it, but they're 10km and 200km away respectively, and given my feet are numb and I've taken what seems like my body weight in pain killers, probably not a good time for a road trip.

On a more positive note (I'm trying to spin it), I am getting to watch some pretty interesting daytime TV at the moment.  I caught a bit of Dr Oz yesterday, who was talking about superfoods for your skin.  Now, my skin is pretty fabulous - a girl's gotta have a win every now and again - but I was still intrigued by the assertion that capers have anti-inflammatory properties. 

Capers are really low in calories (23 calories per 100g), and very high in quercetin and rutin, which are both flavonoids and powerful anti-oxidants.  Quercetin has anti-bacterial, anti-carcinogenic, analgesic and anti-inflammatory properties; while rutin strengthens capillaries and inhibits platelet formation in blood vessels. Rutin has found application in some in trial treatments for hemorrhoids, varicose veins and in bleeding conditions such as hemophilia. It also found to reduce LDL cholesterol levels in obese individuals.  Capers contain healthy levels of vitamins such as vitamin A, vitamin K, niacin and riboflavin, as well as minerals such as calcium, iron and copper are present in them.

So... given I quite like capers, I now have no excuse to not partake in sandwiches of smoked salmon, cream cheese and capers... good for my tastebuds, and apparently also very good for my RA!

Things I love: Thermoskin Arthritis Gloves

It doesn't matter what the season or the occasion, I have never worn these gloves and not received a compliment on them.  Unfortunately it means that often people get a bit "grabby" with my already-painful hands for closer inspection - it's sharpened my reflexes no end! - but ultimately, these Thermoskin Arthritis Compression Gloves are both functional and (almost) fashionable!

They're made of the neoprene that most people associate with Thermoskin products, which both generates and retains warmth (which can be a little problematic in summer, but bear with me), but with the added bonus of "grip" spots which mean that opening door handles, holding cutlery, etc. is a whole lot easier.

They aren't kept in stock in many pharmacies that I've ever been to, but are easily ordered from a wholesaler and retail for under $50 a pair.  Depending on how often you wear them, and how well you look after them (I always do up the velcro and wash in a delicates bag - or sometimes even hop in the shower with them on and wash them that way), they can last a considerable length of time.  I've had pairs for a couple of years before I've "retired" them - eventually the grip dots wear down and the gloves stretch so they don't provide the same amount of support/compression - but I have friends who gratefully accept my hand-me-downs to wear as normal gloves, as they're super-warm!

Satan's tic-tacs

Anybody who has ever been on corticosteroids will tell you they're evil little pills. Don't get me wrong - when they work, they're like little white miracles that can make you feel so much better!

But when they don't work - or they cause side-effects - they are evil, nasty, bitter little pills that can quite literally send you crazy.

Everybody is different. Me? I put on copious amounts of weight (this round, I'm up to +15kg and I'm not impressed!), get overly emotional, and can't sleep. If being perpetually exhausted doesn't make you wanna cry, the weight gain certainly will!

Sometimes I just don't know whether it's worth it. I don't feel any better, and the side effects only make me feel worse that I already do. The catch-22 is that you don't know how terrible you will feel off the pred. If only there was a crystal ball!

Things I love: Bodum glasses

Anyone with RA will tell you that there are some days it's hard to grip things.  One of the things that has repeatedly caused me problems (and made a hell of a mess!) is drinking glasses.  As soon as you get an iced drink in a glass on a hot day, you end up with condensation on the outside of the glass.  My RA hands have dropped (and smashed) many pieces of glassware as a result - until I found the perfect solution.  Bodum Pavina Glasses!

They come in a variety of sizes - and as they're designed for lattes and cappuccinos, the silicon band protects hands from the temperature of the liquid in the glass and makes it easier to grip.  The best part is that the fine (but tough) glass is light as a feather, and the glasses are also reasonably large in diameter, so even on the worst days they're easy to hold onto.  They come in a range of colours and sizes (from espresso-sized 100mL to jumbo-sized 600mL) and are dishwasher safe... I highly recommend them!

Getting the warm fuzzies!

I survived a whole day at work today.  Don’t get me wrong – I'm really paying for it now, but it felt good to push past the pain, the stiffness and overall feeling of almost-dead-ness and be relatively productive.  Now I’m propped up in bed, electric blanket on, and waiting for the painkillers to do their thing before I settle in for the night.

I wanted to share with you something that made me smile today.  In fact, it gave me that warm, fuzzy feeling that I’ve not had in a while.  You see, like I said yesterday – I have incredible colleagues.  They are so understanding and supportive, and I consider myself to be very lucky to work with such great people.  That said, they still surprise me sometimes.

One of the girls asked me today how I do it - how I turn up to work, without complaining about the obvious fact that I'm in pain, and just get on with it.  "But don't you just think 'Aahh, screw it' sometimes?  Don't you just get depressed?".  I didn't really have an answer for that - of course, I have my days.  We all do, we're human after all.  But I explained that I didn't want to be labelled "Negative Nancy" or "Grumpy Gertrude", so I whack a smile on my face and do my best to get on with things. I'll have a cry every now and again when the pain or the frustration overwhelms me, but I try to keep a lid on it as much as possible.  She smiled and said "You're amazing." with such sincerity, it almost turned on the tears.  But then she followed that with the words that really did set off the waterworks.

"I wish I could live in your body for five minutes, just to be able to understand what it must be like."

I felt the tears prick at my eyes.  I was overwhelmed by her compassion, and a little part of my was so honoured that she wanted to feel my pain.  To understand it.  To try to live a full and fulfilling life, while being in agony.  They were such simple words, but they didn't need to be complex to have meaning.  They truly made my pain more bearable, if only for a moment.   

So to Ash - thank you for making my day.  I appreciate the sentiment, and only hope you never have to experience what it's like to live in this body for more than just a moment.  

Oh, and my copy of Hero Food by Seamus Mullen arrived today!  Woohoo!  Now to recover enough from this flare to get myself out to buy the fresh ingredients for - and then cook - some of the delicious looking recipes in there.  Yummo.  Thanks for being one of my RA Heroes, Seamus!

Sites I love: Creative photography at its best!

This link appeared in my Facebook feed today, and I couldn't not share it.  

Jason Lee is a wedding photographer, who started taking photos of his two daughters back in 2006 when his mother was diagnosed with non-Hodgkins lymphoma. The girls were constantly sick, with colds and coughs so he couldn’t always bring them to visit their grandmother. Jason wanted her to be able to see her granddaughters without catching their kid germs so he started a blog where his mum could see what was going on in their lives.

Most of the ideas come from his daughters – eight-year-old Kristin and five-year-old Kayla. Jason says that they are never-ending sources of ideas.

What a creative portfolio - and what gorgeous little girls!  Every photo is filled with such joy, I needed something to put a smile on my face and these did the trick!

I swear I'm not crazy...

... but I name inanimate objects.  Most notably, my car.  Her name is Ruby Lou.

Since my RA has gotten a lot worse in recent times, I was really struggling to get in and out of my old car, not to mention operate the clutch.  So I splashed out and bought this higher, safer, automatic Subaru XV - and quite frankly, it was money very well spent.

I also name other things.  My RA is (mostly un-)affectionately referred to as Arthur.  My nodules (the ones I have so far) are Nigel, Norman and Norbert.  Horatio and Hagrid are my hips.  Bert is my moon-face (anyone who's Australian and knows the side-effects of prednisolone will understand that one - I have more hair than the 'other' Bert though!).  Notice they're all male names - men are problematic at the best of times! - and I should point out, they're just RA, nodules and hips when they're not playing up.  When they're inflamed and angry, however... that's when their names are muttered through gritted teeth and usually with a side-serving of vitriol.

We name the things we love so we can talk about them.  Naming the things that hurt allows us to lay blame, and while I'm no psychologist, I'd say it's a reasonably sound coping mechanism.  It allows me to be angry with 'someone', when there's nobody to blame for what I'm going through.

And today, Norbert is being a right pain in the nodule.

Four hours...

So after nearly a whole week of bed-rest, I dragged myself out of bed this morning and braved work.  My body protested loudly - and I mean loudly, I'm sure the neighbours mistook the cracks and groans of my hips and knees for thunder claps - but I did my best to make myself look presentable and get out the door.  Lucky for me I have family who live close by, and I got a lift to work, as it's fairly usual for me to have a couple of km to walk from where my car is parked to where I work, which in my current condition is pretty much my daily quota right there.  I got dropped at the door, gritted the teeth and in I went.

My colleagues are extraordinarily understanding.  Working in health, you'd expect them to be - but I appreciate it all the same.  They could see I was in trouble a mile off today.  Apart from the fact that my eyes look like the devil himself is reflected in them (the redness of scleritis is very difficult to mask!), my slow, deliberate movements and tell-tale shuffle, combined with my "comfort" wardrobe and compression gloves, tell a story without me so much as opening my mouth.  My boss helpfully found me some computer-based work to do, and got me set up so I wouldn't have to move.  Just type.  Barely even think, which given the mix of pain-brain-fog and pain-killer-brain-fog, wasn't a terrible thing.

But four hours was my limit.  They were four of the more painful hours I've had in the past week or two - when you're at home, you can zonk yourself out with the meds required to make you comfortable.  You can prop yourself up with cushions and pillows and heat packs.  You can cry.  None of these things can happen at work.  Try as I might, I put on my happy face (well, it was more of a grimace today, but I was making an effort!) and do my best to put the pain, stiffness and emotional weight to the back of my mind.  It doesn't always work, which is why it got to lunch time and I had to admit defeat.

I'm now walking the tightrope that is balancing financial need with physical need.  I've exhausted my leave entitlements, so now what I don't work, I don't get paid for.  That's not ideal, but at the end of the day I can't afford to not work.  But some days my body can't afford for me to try to work either.  Catch 22.  

My only hope is that I will wake up tomorrow morning feeling brighter, bouncier and just downright better.  I'm holding on to the little hope I have left with two crippled, sausage-esque hands... and while I can't hold on very tight, I can assure you I'm not planning on letting go without a fight!

I'm so excited - RA Awareness Bracelets!

I'm excited - after ten years I've finally just tracked down a Rheumatoid Arthritis awareness bracelet that I like the look of! Yay for Pura Vida Bracelets!

Their MO - enjoying life slowly, celebrating good fortune and not taking anything for granted - definitely struck a chord with me!

If you'd like one of your own, check them out at Pura Vida Bracelets and become a FB fan too!

Defying RA: Defying Gravity!

I figured it was high time I told you a little more about myself... as you will know, I'm Rebecca.  My initials are RAW - ironic, then, that I was diagnosed with RA - and as a Leo, I do tend to roar a bit!

My day job is as a pharmacist, which means I'm a little more in tune with my medications than most patients.  Outside of that, though, I love music.  Always have - it absorbed the vast majority of my time growing up, and I'm a bit of a musical theatre nerd.  I performed in a few productions growing up, but the demands of working full-time, studying part-time, trying to have a life on top of that, and then the exhaustion of having RA mean that as much as I'd love to do it again, I simply haven't got the energy (oh, or the time).  Doesn't mean I don't sing my lungs out in the shower, or around the house, or in the car, or pretty much anywhere to be perfectly honest!

Defying Rheumatoid Arthritis seemed like the most logical name for my blog for a couple of reasons.  Firstly, my aim has always been to defy the diagnosis of RA, and prove that it doesn't have to be a negative thing.  Secondly, 'Wicked' has always been one of my favourite musicals - my dream role is to play Elphaba one day! - and "Defying Gravity" is, in my humble opinion, one of the most incredible pieces of music ever written for the stage.  If you haven't seen or heard it, I've written out some of the lyrics that make it ring so true for me (The fact that I live in Australia (Oz) is just a bonus...!):

Something has changed within me

Something is not the same

I 'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts 

Close my eyes: and leap!

I'm through accepting limits  

'Cause someone says they're so  

Some things I cannot change  

But till I try, I'll never know!  

Too long I've been afraid of  

Losing love I guess I've lost  

Well, if that's love 

It comes at much too high a cost! 

So if you care to find me  

Look to the western sky!  

As someone told me lately: 

"Ev'ryone deserves the chance to fly!"  

And if I'm flying solo 

At least I'm flying free  

To those who'd ground me  

Take a message back from me 

Tell them how I am  

Defying gravity  

I'm flying high 

Defying gravity  

And soon I'll match them in renown  

And nobody in all of Oz  

No Wizard that there is or was 

Is ever gonna bring me down!

I'm defying gravity every day.  And while I'm flying solo, I am flying free - and you can't put a price on freedom.  I hope this song inspires more people with RA to defy gravity today and every day!

If you are going to hop onto YouTube to find this song so you can hear it, I'd highly recommend you listen to a version by Idina Menzel, who is the original Elphaba from the Broadway production of Wicked - other versions are good, but hers is absolutely sublime!

Advice from a professional patient: Keep the peace.

I genuinely feel for people who rely on our public health system - whether it be because they can't afford private health insurance, or whether it be because the only access to hospital they have is a public one.  It's not because the standard of care they receive is any less, because quite frankly, I think those who work in the public health system are nothing short of incredible.  No, it's because the system is frayed at the edges and putting pressure on these fabulous health professionals, unrealistic demands on an already underfunded system, and the resulting wait times and so forth keep ballooning.


The thing that really gets me going, however, is the fact that some patients are so darn ungrateful for the people who are working their butts off to help them.  I work in public health, and like I've mentioned before, have the unenviable position of playing patient on a regular basis.  I know what it's like waiting ridiculous lengths of time in a crowded waiting room to see a doctor.  I know what it's like to spend half your monthly earnings on health-related expenses like medication, doctors, and tests. I know what it's like to be trying to keep your cool as you get bounced from doctor to specialist to doctor to specialist, desperate for a diagnosis.  And believe you me, I know what it's like to just want it all to be simpler.  Quicker.  Easier to navigate.


Sitting in waiting rooms you hear some pretty interesting things.  In recent times, my health has been pretty crummy and I've spent way too much time waiting for doctors.  I've had to start taking earphones with me, so I don't have to listen to the rubbish that comes out of people's mouths in waiting rooms, because it just makes me so darn angry!  Take for example the gentleman (I use that term loosely), who sat in the waiting area for a whole fifteen minutes and whined and moaned the entire time about how long he had been waiting.  Now, I'll forgive a bit of a gripe about waiting, but when he had been waiting less time than the other 20-odd people in the room, it was a bit rich.  Add to his rant that he then started to bad-mouth his doctor - "I don't know why I wait, he's hopeless anyway, and he charges like a wounded bull" - and my blood started to boil.  I've no idea which doctor he was referring to, nor do I care.  If you're not happy with your doctor, there is a time and place to voice your concerns - and the waiting room is not it.  


Ungrateful patients make angry for many reasons.  Firstly, there are plenty of people around the world who would give a non-essential organ for access to healthcare like we have in Australia.  They simply don't have a choice - and when they do need to see a doctor, if one is available, they will queue for an entire day without complaint if need be.  Secondly, doctors and other healthcare professionals are people too.  We're human, we make mistakes, and we're doing our best.  There are a lot of demands on our time that the patient doesn't see - being interrupted for emergencies, to discuss a patient who has been admitted to hospital, or to counsel a patient who has just received a grim diagnosis.  Thirdly, you have to hold up your end of the bargain.  If you think the health system is going to support you and bend over backwards for you, but you're too lazy/stubborn to take your medication, exercise, eat healthily and live a healthy lifestyle, and then you criticise the system because "Dr. Google" disagrees with your diagnosis - then you're not just ungrateful, but you're arrogant.  Patients who fall into this category make me want to throw things.  Sharp things.  In the direction of their heads.


But I digress.  I don't argue that it can be a very frustrating system to be a part of, and to be on the receiving end of.  Through it all, I have never lost my temper with the system or anybody in it.  I am (according to the secretaries at the numerous medical practices I frequent) one of the all-time favourite patients.  I turn up to my appointments on time, book in advance, am polite and courteous, pay my bill on the day, and always wish everyone I encounter a good day as I depart.  They're not big things - hell, I'd argue they're common courtesies - but they make me different in the grand scheme of things as far as patients go.  The thing that other patients seem to forget is that the secretary is the gatekeeper.  They like you, they find a gap in your doctor's busy schedule to fit you in.  They like you, they go out of their way to help you.  They don't like you, or perhaps even just don't know who you are, you won't get their help which can be the difference between an appointment today, or an appointment in a week's time.  


So today's piece of advice?  From Desiderata (again) - 

As far as possible without surrender,
be on good terms with all persons.

You never quite know when you might need one of those people to go in to bat for you and your health!

Survival Tip: Looking Your Best

I'm currently mid-flare (well, I hope it's more end-flare, but let's go with mid- and hopefully I'll be pleasantly surprised) and all but confined to the comfort of my bed - but often I feel pretty dreadful and have to soldier on in my everyday life.  The down side of that is that I am a pharmacist in a hospital, so people not only expect you to look healthy, but the moment you don't - they tell you!  Helpful, people... really.


It's because of this that I've picked up a few tricks along the way to ensure that I look semi-healthy under the life-sapping, skin-sallowing fluorescent lighting that comes with working in public health.  I am forever indebted to a couple of products which I find really useful and easy to use, so even if my hands are more painful than usual I can still manage to make them work.  

Garnier Miracle Skin Perfector
Man, I don't know what I did before this stuff.  It's a tinted moisturiser (comes in Fair-Medium or Medium-Dark), and also a BB Cream (which is short for Blemish Balm, basically one of the buzz terminologies of the beauty world at the moment).  The end result is a cream that a) adjusts itself to your skin tone, b) covers imperfections, c) leaves you with dewy, radiant (but not shiny or greasy) skin, and d) moisturises at the same time!  It is SPF15 so if you're heading outside you will need to use a sunscreen as well (particularly if you're on any DMARDs that increase your sensitivity to the sun!), but ultimately it's really quite inexpensive and despite my having relatively sensitive skin, I find it fantastic.

Garnier Roll-On Caffeine Concealer for Eyes
It's not the best coverage concealer I've ever used, but I really like it because it doesn't drag on the delicate skin under my eyes, and it really does seem to lessen the dark circles with repeated use.  I wish I didn't need to use it (read: I wish I got enough sleep that I look perennially bright-eyed!), but it's not a chore to use.

Alpha Keri Dry Cracked Lip Relief
Lip balm... yes, there are millions.  Literally, millions.  And everyone has their favourites, but here's why Alpha Keri is mine.  Firstly, it doesn't taste bad.  We all know that at least 20% of lip balm applied to lips somehow ends up in your mouth - even if we don't intend for it to.  It doesn't really have a 'taste' or 'flavour', just a menthol-y fresh one which isn't unpleasant or minerally like some other balms I've used.  Secondly, it stays on.  I HATE having to reapply my lip balm or gloss every twenty seconds (which, coincidentally, is why I am the Queen of Lancome's Juicy Tubes - Melon is a fantastic everyday pink), and this little balm has really good staying power.  Thirdly, it's great even if you have those annoying I'm-really-run-down-and-the-corners-of-my-mouth-have-cracked cracks, and helps to heal them up pronto.  Fourthly, it's SPF30+ so it protects your poor, sensitive little lips from dryness AND sun.  Fifthly, despite my very sensitive skin, my lips are even more sensitive to products (if that's possible), and this doesn't upset them.  Win!

KMS Hair Play Makeover Spray (Dry Shampoo)
I love this product for many reasons.  Firstly, I have dark hair (this week) so there is the usual drama of dry shampoo being 'visible' even after you brush it out.  Not a problem with this one, and it has the added bonus of being the yummiest smelling dry shampoo I've ever smelled!  The other thing I love about this dry shampoo over others is that it's still very light, so you can use it to add some body to freshly washed hair if you need to.

Weleda Arnica Massage Oil
This one isn't so much cosmetic as it is therapeutic, but it fits here ok!  It smells of lavender, and as anyone who has ever needed massage oils will attest, smell is kinda important.  There's the somewhat icky oil smell, or the Deep Heat smell, or those herby oil smells... this doesn't fit into any of those categories.  It's not strong, so you won't walk away smelling like Grandma, but it's not unpleasant either.  Added bonus is it is very moisturising, so whenever I have flares in my feet, knees, hips, back, shoulders, neck, elbows or wrists, I crack open the bottle and let it do its work.  I had always been pretty sceptical about Arnica, but I'm a convert!

The Body Shop Shea Whip Body Lotion
I've always had dry skin and used a lot of moisturisers, and since starting DMARDs my skin has been drier than ever.  Enter Body Shop's Shea Body Whip.  Not only does it smell delicious, but it's also a really nice balance of super-moisture combined with non-greasiness, which is really important to me (because my slow-moving body generally means I'm running late any time I'm applying moisturiser, which means I don't have the luxury of waiting for it to soak in before I get dressed!).  




Anyway, they're some of my favourite products.  I have plenty more (you should see my bathroom!), but these ones are ones I simply couldn't trade.  Other tricks I find really boost my looking healthy include:

• Mascara.  I'm not much good at applying it when my hands are flaring (and I like being able to see, so tend to avoid mascara if the likelihood of poking my own eye out is high), but it makes a world of difference and definitely makes you look awake!  Even better if you can negotiate an eyelash curler too... but let's not get too carried away!
• Pearl white eyeshadow.  Dab a little bit in the inner corner of your eyes for instant lift.  Honest.  If you're feeling really adventurous/steady-handed, using it as an eyeliner will make you look even more awake.
• Blusher.  Honest to god, nothing puts colour in your cheeks like some colour in your cheeks.  Bet you didn't see that one coming, did you?!
• Water.  Water.  Water.  Go nuts.  I know that with all that fluid build up in and around your joints, it's tempting to go easy on the water - but dehydration is never good for you, and nor is it a good look.  Lots of water means happy skin, happy kidneys, and happy you.
• Skin care.  Find what you need, and what works for you - and go with it.  As someone who has battled eczema all her life, I am a big, big advocate for finding products that suit your skin and sticking with them.  It doesn't matter what your skin type is, or what your budget is - there will be something out there, I promise!  Just promise me that you will use your face products (ie. cleanser, toner, moisturiser) all the way down to your cleavage... believe me, a nicely moisturised face with a wrinkly neck and decolletage will give away your age quicker than Tim Shaw will give away a set of steak knives!

If you're inspired to find more handy tips and tricks, you should check out Amazing Face by the lovely Zoe Foster.  While I got lucky with a mum who taught me a lot of what I needed to know, and then working at a cosmetics counter through uni - I know not everybody has that luxury.  And hey, I still learned things from Zoe's book - in fact, I read it and went out and bought a bottle of Rosehip Oil (Cheap! Natural! Brilliant!) on her recommendation and my skin hasn't looked back!  

Disclaimer: I do not own any of the images above.  All of my recommendations are things you will find in my bathroom, handbag or bookshelf.  I paid for all of them - but will happily receive gifts from the companies whose products I have so glowingly endorsed in this post.  Or I will happily hang out with Zoe Foster until such time as her effortless elegance, beauty and togetherness rubs off on me... 

Fighting for change - RA Warriors Unite!

Kelly at RAwarrior.com has written this thought provoking (and honest!) article called 5 Reasons Rheumatoid Disease Is a Better Term Than Rheumatoid Arthritis.  Everything that is italicised in this post is directly from her article.
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As researchers recently explain, Rheumatoid is a systemic disease, present outside of joints, and prior to articular abnormalities: “Rheumatoid arthritis (RA) is recognized to be an autoimmune disease that causes preclinical systemic abnormalities and eventually leads to synovial inflammation and destruction of the joint architecture.” So much for those saying “There is no RA before visible synovitis / joint swelling is diagnosable.”

Patients – and doctors – themselves are confused by the name. The blog has seen hundreds of these examples, but here are two from this week:

An ENT specialist reacted to an RA patient complaining of vocal cord inflammation. “He looked at me like I was an idiot and said ‘But there are no joints in the voice box.’” (In case you didn’t know, one, that doesn’t matter since RA affects more than joints and, two, yes there are. Joints in the voice box that is.

Another RA patient visited the eye doctor “after I came down with a bad case of Iritis and Epislceritis. When I asked my ophthalmologist what it was, he said ‘You have arthritis in your eye.’” This doctor knew the disease could affect eyes, but didn’t have a term to explain it. Saying “arthritis” in the eye is not logical since “arth” means joint” and there are no joints in the eyes. No, really. This time, there aren’t.

Non-articular symptoms of Rheumatoid would be more likely to be treated if the term were updated. We constantly see this struggle. The opinion of an expert: “Perhaps rheumatologists should consider revising the approach adopted in the routine assessment of RA patients by using an annual review form to include the systemic aspects of the disease in addition to its articular manifestations. This could be roughly analogous to the approach taken by diabetologists for decades, which has helped to reduce mortality through regularly recording of predictors such as blood lipid profiles, blood pressure, hepatic and renal function, together with a global measurement of disease activity.”

Researchers still don’t know enough about Rheumatoid disease to say why or how it attacks the body. Their work is better served with more accurate terms: “‘We call it rheumatoid arthritis, but we should really call it rheumatoid disease,’ notes Elinor Mody, MD, director of the Brigham and Women’s Hospital Women’s Orthopedic and Joint Disease Center in Boston. Rheumatoid arthritis can damage the whole body. Besides the joints, the ‘heart and lungs are the most commonly affected,’ says Dr. Mody. Doctors aren’t sure how or why rheumatoid arthritis causes other organs to suffer. ‘We don’t know the whole story,’ Mody says.”

Lives will be saved. Just last week, two more patients posted that their doctors dismissed symptoms, judging their disease according to their hands, even calling RA a hand disease. I’ve seen this firsthand as well as hearing from many patients that this common misconception lives on even in some doctors. Changing the name will correct this misconception and call attention to the need to treat the whole disease. In spite of common confusion that RA activity is concentrated in the hands, there are several dangerous aspects of RA that are more common than once recognized such as spinal damage, heart disease, or lung disease."

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I am in favour of this for many reasons.  Firstly, when I'm not being a patient I'm a clinical pharmacist who gets to be on the other side of the healthcare partnership here in Australia.  It frustrates me no end that there are far too many health professionals who simply don't understand that RA is not just a joint disease, but in fact a systemic disease that manifests in the joints (amongst other things).  

Secondly, I have many extra-articular issues with my RA.  Some that I struggle with daily, others that really only worry me when I have a flare.  But ultimately, it's only because I am educated about RA and all its intricacies that I have had a lot of my out-of-joint symptoms taken seriously.  Don't even get me started on ocular symptoms...!

The better the awareness, the better the understanding; and the better the understanding, the better the treatment for those of us who are patients - and one of the best ways to improve understanding is to label this disease as something that more accurately reflects its actuality.  Kudos to Kelly, and all those fighting for change!

Bed-bound again.

There are very few things I 'like' about having RA.  Actually, come to think of it, I can't come up with any - so I apologise for the blatant fib I opened this post with!  


I'm in bed for the fourth day straight (which is technically day 8, as Monday only gets an "out of bed" rating because I got up and went to work, though I only lasted part of the morning), and I'm in limbo.  I would dearly love to be getting some assignments done for uni, only my brain is too fogged out from the combination of pain and pain-killers (the exact ratios of which I'm not sure, but let's say 50:50).  I've tried to read a book, but I keep reading and re-reading the same paragraph over and over because I get distracted by the 50:50.  I've tried watching movies (they go too long, and my concentration span is that of a goldfish), TV (slightly better), and the back of my eyelids (easier said than done - I'm exhausted from poor quality and quantity of sleep, but getting comfortable enough to get any is quite the task).  Ultimately, I'm propped up in a semi-comfortable position, cat on the bed next to me (very put out she can't sit on me, but it's just too painful) and staring at the wall.  


When I have a lucid moment, I'm taking the opportunity to blog, to catch up on the emails I should have written ages ago, and carefully plotting my return to the real world when my body resembles normalcy again.  That was when I realised - for all my pain, for all the inconveniences and all the annoyances, and for all the things I can't do right now, there are many things I can.  


Stop.  
Breathe.  
Relax.  
Reach out. 
Take stock.  
Give thanks.  

They're things I must admit I tend to find on the lower end of my priority list when I'm "well", because I simply try to do too much in too little time.  I don't know about the rest of my RA counterparts, but I've always been a doer.  The kind of person who comes up with the idea, makes the plan, and executes it.  Usually in record time, mind you.  Being diagnosed with a chronic disease that robs you of your energy, physical strength and endurance, is pretty much tantamount to torture for people like me.  


So today, from the comfort of my bed, I am taking stock of all the good stuff in my life.  I am giving thanks for what I do have, and not worrying about the things I don't.  I am trying very hard to relax (those of you who understand severe pain will understand how difficult this really is), and I am reconnecting with people I should have kept in better contact with.  It may not be what I'd like to be doing today, or even what I should be doing today - but doing nothing simply isn't in my DNA.  


If you haven't ready it, Desiderata, by Max Ehrmann, is a very moving piece of writing that reminds us that we are human, and all a part of a much bigger picture.  My favourite lines are:

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

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With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Things I love: OXO Good Grips

I know I’m growing up, because instead of making a beeline to fashion outlets and shoe stores, I tend to get all giddy and excited about homewares and decorating.  There are many things that frustrate me about having crippled and painful hands, but one of the biggest is that they make so many kitchen items that are near impossible to grip, or get lids off, when your hands ache.  It doesn’t help that I am a) fiercely independent and b) live alone, so on a bad-hand-day, the lids don’t come off the jars and canisters, nothing gets chopped, and I revert to the easiest (translation: often least nutritious!) option for food.

Enter OXO Good Grips – not only do OXO make fantastic items for the kitchen, but they’re also the company responsible for the incredibly innovative pre-filled syringes of Cimzia (if you’ve ever had it, you’ll know what I mean... even my crippled hands could manage that much!).  Open my pantry or kitchen drawers and you’ll find an array of their wares, but if you could only manage a few items, I’d highly recommend these...

OXO Pop-Top Canisters

These come in a range of sizes (diameter and height), and feature a great pop-top that both undoes the airtight seal and acts as a handle to easily remove the lid.  These were my first OXO discovery and purchase, and since then I've given them as gifts to arthritic and non-arthritic friends!

The OXO Masher

Quite frankly, it's the best masher I've ever used.  Even non-crippled cooks rave about it.  The only problem is that it's metal, so no mashing in your teflon-coated pots - but easy to hold, and it mashes beautifully for perfect comfort food.

OXO Scissors

These are fantastic - they cut through anything without requiring much grip strength, are easy to hold onto, and come apart for easy cleaning.  I even bought a second pair of these for my desk, they're awesome.

OXO Peeler

This and the U-shaped peeler are both great.  Their big handles mean they're super-easy to keep a hold of, and the blades are super-sharp to ensure that they glide across whatever you're peeling.  

OXO Super Spreader

This knife may look a little odd, but it's a fantastic spreader which is also sharp enough to cut through your average sandwich, or block of cheese.  Mine barely makes it back into the drawer, it gets used so often!

Your local homewares store should be able to source OXO products for you, but if you live somewhere a little less metropolitan like yours truly, I can highly recommend KitchenwareDirect - orders over $100 are shipped for free, and they are super-competitive on price!  Now to save up so I can afford a KitchenAid Mixer...

Things I love: Quality OSFA Outfits!

OSFA, or 'One Size Fits All' outfits are an absolute MUST in any girl's wardrobe.

Now, if you're anything like me and go through periods where copious amounts of corticosteroids are a necessity, and you're super-sensitive to their least-desirable side effect (weight gain... gah!) - OSFA outfits are a godsend.  I won't lie - open my wardrobe right this minute and at least 30% is OSFA (with about another 10% of sized super-stretch).  They are so forgiving, and a quick wash and they bounce back to their normal size (even if my swollen prenisolone-filled body has stretched them a bit).

The great thing about these outfits - the good quality ones, anyway - is that while they aren't cheap initially, they're a great investment because they wear really well, take very minimal upkeep (ie. no ironing - massive bonus), and last forever.  Well, forever might be a mild exaggeration - but my first Metalicus tunic purchase was about 6 years ago and I wear it at least once a week, but it still looks brand new.

I've learned that the wool blends (merino, usually) are the best value, and don't bobble if you treat them kindly.  That said, the cotton blends are great layers which you would replace every couple of years anyway, and they last at least that long.  My favourites are Metalicus and Mesop, both great Australian brands who bring out great seasonal colours and classic staples.  Both have some sized pieces (Metalicus in size 1 or 2; Mesop in 1-3) but also some OSFA, so it just depends on what you're after.  Even better still, Metalicus have just bought out some great "triple treat" items which have tabs and tapes to adjust the basic skirt, dress, vest or cardi and wear it in a multitude of ways.  Genius!

Anyway, I worked a lot of overtime over Easter (translation: an insane amount) and thus was rewarded with a slightly bigger than normal pay packet this week.  I rewarded myself with a new dress from Mesop, and I am in love... even better that I could buy it from the comfort of my sick bed and it was delivered within 18 hours. Thanks to Tanya and the girls from birdsnest.com.au for the wonderful service - if you're in Australia and love to be able to shop from home, check them out (and feel free to drool over my purchase - I chose Fern - on their site here)!