Sing it, sister!

Growing up, the vast majority of my time outside of school was spent doing one of two things - playing sport, and performing.  I miss a lot of the things that were once my day-to-day life, like playing, coaching and umpiring netball, playing tennis, being able to run... but my biggest regret is losing music from my life.

I've always been a musical girl.  I was lucky, I had a reasonable amount of talent that meant that it came easily to me.  I was never one for practicing (which I'm sure is responsible for the majority of my violin teacher's grey hair!), and it never took me long to teach myself a new instrument.  But as my hands don't work the way they once did, the concertos and sonatas that once flowed from my fingertips simply don't happen when my hands hover above the keyboard.

The only thing that I haven't lost (this week the exception) is my voice.  One's voice is such a distinctive instrument - each and every one is unique, irrespective of the fact that they may be interpreting the same piece of music.  It's portable, and you never leave home without it - and is a great way to relax, relieve stress and vent frustration!

When I saw this film trailer the other day it got me very excited... there are so many things about it that I love.  Firstly, anything that uses "No Diggity" in the soundtrack is a winner in my book.  I also adore Rebel Wilson (you may have seen her in Bridesmaids, or if you're an Aussie, in Fat Pizza), so that was a win too.  Add to that the very funny (and seemingly very musically talented) Anna Kendrick and Brittany Snow, and there's a lot about this movie that makes me want to camp out and wait for it to open!

Ultimately, this - and all the musically-influenced television we have at the moment, including The Voice and Glee - reminded me just how much I missed music.  Pity my neighbours - there will be a lot more singing coming from this house once my laryngitis leaves me alone!  Given this time next week I'll be in an arena with a few thousand other music lovers at Lady Gaga's Born This Way Ball, I get the distinct feeling my love of music and performing is going to be rekindled in a big way!

Another first...

... the first virus of the season.

Anyone who has a compromised immune system will sympathise with me.  Anyone who knows anyone with a suppressed immune system will understand that to make it almost to July without so much as a sniffle has been a hell of an effort!

But it's hit.  Granted, it's just a head cold, but in the 3 days it's been cohabiting with me in my body it's gone from a simple runny nose and a bit of a headache to a sinus infection, laryngitis and what I wouldn't be surprised to discover is an ear infection!

I've soldiered on at work, as we're incredibly short staffed this time of year (why, I couldn't tell you... just one of those things I guess) and I've had to plug a few gaps.  Such are the joys of being the jack of many trades!  I've washed my hands until they've cracked (due to dousing them with alcohol rub - once that stuff starts to sting you have to revert to the old water-and-antibac-wash trick), used more tissues than would be considered environmentally friendly, and endured more cracks about my husky voice than should be considered appropriate in the workplace.  

That said, I'm really proud to have dodged the lurgies this long - I'm not impressed that I'm sick, but it's part of the fun!  I am a terrible martyr, and will work through my illnesses unless I am physically unable to get out of bed in the morning - but I have vowed to take better notice of my body this year, and also this NPS graph which details your symptoms and when you're most contagious.

Given I've gotten home tonight, hopped straight into a steamy shower and then into my bed (with electric blanket) and done nothing but sneeze and cough - tomorrow might be a day for staying under the doona.  That said - I don't think I can physically consume any more vitamin C, so now to get some solid sleep under my belt and cross my fingers that I bounce back to life tomorrow morning! 

A sense of achievement.

Sometimes I feel as though I push too hard. I do to some extent, I didn't know any different. But now that semester one is finished, I feel as though I've achieved something huge - I've been sick, I've pushed my body to work 40+ hours a week, AND I've completed another semester of my masters. I submitted my final assignment tonight - and boy did it feel good! It probably wasn't my best work, but I was pushing against the forces of the universe to get it submitted, so I am, just quietly, incredibly relieved to be done.

Everybody needs a goal, something to aim for - that graduation ceremony (because I felt as though I blinked and missed my first one) is just one of mine.

Until semester 2, I am relaxing. Reading books instead of journals. And snuggling with my baby girl in the cold and icy evenings!

A change of pace.

I have spent this Queen's Birthday long weekend on-call and at work - backing straight up after being on-call and working last weekend as well, I'm in a bit of a state.  That said, every moment I'm not at work between now and 2pm on Friday will be spent completing my last assignment of the semester.  I would kill for some down time that is my own - quiet time, to watch a movie or just lie in the sun with a book... but until next weekend, that simply isn't an option.

When you have a chronic disease - whether it be RA, or lupus, or MS, or one of the myriad of other diagnoses that we attempt to hide on a day to day basis - sometimes your body whispers in your ear that you need to slow down.  Other times it speaks louder.  Other times it plain screams at you, deafening you and bringing you to your knees.

I have a sniffle.  Anybody who is on medication to suppress their immune system will tell you that this often means that the inevitable is nigh.  I'm not sure what will await me when I wake up in the morning, but I know that my lifestyle of late has been anything but beneficial for my body.  My eyes are tired, my brain is tired, and my body is exhausted.

If you are reading this and you, like me, are struggling with one of these diseases - take a moment.  Change your pace, smell some roses and take care of your body, before it decides to take evasive action!

Embracing the good days.

Good days, bad days.  We all have them, in varying proportions.  I was on a run of bad days for a good couple of months there - then my rheumatologist returned, we were a bit up and down for a while, and then we finally started to get somewhere.  

Today was the first day where I could honestly say I felt "good" in a very, very long time.

Today, I was published on Mamamia - I'm so proud and honoured to have my piece included on the site.  Mamamia describes itself thus: "On Mamamia everything is up for discussion  – from pop culture, politics, body image, food, motherhood, feminism to fashion and celebrity. We like to have a laugh AND a cry. We’re smart but not precious. Interested and interesting.  We have a community of  tens of thousands of people who are actively engaged and articulate. Just like a real life discussion with a group of women, you never know where the conversation will go. You also never know what’s going to be published on Mamamia on any given day. Serendipity is key."

Anyway, Mamamia allowed my piece to be read by a far wider audience.  Some of the comments made me both immensely proud and overwhelmingly emotional.

"Thanks for sharing your story, the more difficult a story is to share the more important it is to do so. My Dad makes walking sticks, and before he did he never realised how important they are to people who can not be without one. He has seen people choose a stick from his collection and seen how that person has formed a special bond with their stick, not just a tool for getting from a-b but a life long companion, a special firm friendship tht will never end!"

 "Thank you for sharing your story. I agree with others above, the absolute worst part is that people don’t believe you’re sick because with auto immune diseases you often appear quite normal. My mum still doesn’t believe I have lupus, even though I have shared my blood tests, experiences and taken her with me to the rheumatologist. I’ve worked hard to put it in remission, so it appears like I was making it up all those years. It’s very hard having little to no support."

"Rebecca, and all who have commented from their own experience, your attitudes give me hope for my two-year-old daughter, who will face some of these issues in her life after an attack of septic arthritis when she was 6 months old. I need exactly this type of education as the mother who will facilitate her ‘wellness’. Thank you."

And my favourite:

"I am so glad you wrote this post Rebecca, thank you! I was diagnosed with RA at age 11 and am now 26. I have been through it all… the medications and the side effects they bring, bed cradles to keep blankets off sore and swollen ankles and knees, lots of elastic pants and slip on shoes, the many many tests in addition to all the stigma, fatigue… how the list goes on.

The thing I have struggled with the most is the stigma or at least the lack of understanding of the complexities of the disease. I think it is particularly difficult when you are younger and you are trying to find your identity and work out who you are. You don’t want to be associated with an old person’s disease, you want to be thought of as and be young!"

The further we can reach with our stories, the more likely it becomes that society will be more tolerant of the pain and suffering it can't see.  There is so much awareness and fundraising for research into diseases like cancer, and anything that affects children - not that I begrudge them their awareness and campaigns, but I honestly believe that chronic diseases put such a burden on the individual and society that it would be so wonderful if some of the promotion of diseases came to focus on our life-long struggles.

I also bear in mind the fact that there are plenty of people out there who are like I was a few years ago - nowhere near being at peace with my diagnosis, deep in denial, and not wanting a bar of my prognosis.  My voice, though just one voice, may just speak for more than one person. It makes me all warm and fuzzy to read the comments from women who perhaps haven’t been able to speak out about their disease, whatever the reason. 

We’re all put on this crazy planet for a reason, and if mine is purely to endure and verbalise – I can embrace my purpose. 

It's been a while...

... but a forty-hour week at work has knocked me pretty flat.

I'm tired beyond any level of fatigue I've ever felt before.  My muscles ache like I've run a marathon, yet I haven't raised a sweat.  After so long confined to my house - and more specifically, my bed - it has been both exhilarating and exhausting to return to work.

On that note, I have only one day in which to rest before I have to tackle another six days on, so I am going to return to my old friend bed and rest my aching body.  Sometimes you just have to accept that your limit has been reached - and admit you need to recharge before you try again.  Today is one of those days.

May your achievements be many and your aches be few!

Inspiration: Don't Quit.

Survival Tips: Steroids

It's a little after midnight, and I am always asleep by now.  By always, I mean 95% of the time.  The other 5% I am on steroids. Now, I wear a lot of hats.  One I haven't gotten out to show you thus far is my Professional Pred Pusher hat.  

I've taken a lot of steroids in my time - sadly, my muscle tone will never get me any attention in a gym, so it's pretty safe to say it's not the anabolic variety.  Nope, corticosteroids are my ragers of choice - well, not choice, but you get the picture.

I have picked up a few bits and pieces in my time as a pred taker and a pred dispenser, and I feel my personal experience allows me to be a lot more "honest" with my patients about the potential side effects.  I am going to share some of my wisdom (and funny anecdotes) with you, as at this time of night and wired on pred I feel particularly hilarious. ;)

Firstly, learn your steroids.  Most of the generic names end with "solone" or "sone", and a lot of them contain the word "cort" or "pred".  For the sake of this blog, I use a lot of these terms interchangably.  Anyway, you can be given steroids orally, by intravenous injection, injection into muscle or directly into a joint.  All of the above have side effects, problems, pros and cons - but the main points are much the same regardless of the dosage form.  If you have any specific questions about the steroid (or in fact any medication) you have been prescribed, please speak to your pharmacist or doctor who can tailor their advice to your specific situation.  

Advice #1:  Ok.  Roids.  Ragers.  Downers.  Jerkers.  Satan's Tic Tacs.  I have been known to call them a lot of things, mostly nicknames that give you a bit of a sense of one of the main side-effects I experience.  I get teary, emotional, overly sensitive, short-fused, grumpy... getting the picture?  I (and those who love me!) have been fortunate enough to dodge the PMS wagon - hey, I got RA amongst a myriad of other equally awesome diagnoses, something had to give! - but I'm guessing me-on-roids is probably a bit of an insight into what I could have been like once a month.  I have a tendency to warn people, particularly my colleagues, if I've had to crack open the bottle of Satan's Tic Tacs, as it's a little unfair for them to be telling you about how they ran out of milk for their cereal that morning and have you burst into tears.  Or someone doesn't replace the staples when they run out and they incur your wrath.  For the sake of workplace harmony I spell it out for them up front.

Advice #2:  The second side effect that drives me mental is the alertness.  I take my roids at 6am when I first wake up, and will still often be awake at 3am the next day.  Yup.  I'm exhausted, but can't sleep.  This morning's infusion of 125 times my normal prednisolone dose will probably have me pinging for the next 36 hours or more.  Pity those around me who try to get me to make any sense!  It's times like these that you can't sleep, but you can't exactly concentrate enough to do anything purposeful - so I suggest building up your DVD collection, or treating yourself to a TV series from iTunes.  I invested in a digital TV last year that allows me to plug in a USB hard drive, and at the moment I am having a 30 Rock marathon - mostly because I find Tina Fey to be reliably hilarious, but also because the content of your TV watching must be positive and upbeat, lest you dehydrate yourself from irrational emotional outbursts (see point 1).  Anyway, said TV is in my bedroom so on days I can't get out of bed, I just have to motivate myself to reach for the remote and let the TV do the healing.

Advice #3:  The third thing that I should warn you about is the munchies.  Roids stimulate your appetite like nothing else on this earth, and thus I have two very, very important tips for all you roid-virgins out there.  Firstly, remove all forms of carbohydrate from your house.  I have always found consumption of said carbohydrates to be particularly helpful, but I know this to be problematic in the medium-long term.  Secondly, dismember (ie. remove batteries from) or hide your bathroom scales.  They are NOT your friend whilst on roids.  Let me assure you, when you can't sleep you eat, when you can't think you eat, when you're bored you eat, and when you're hungry, you eat.  Remember you will be two to ten times more hungry than usual.  That's a lot of food, my friends.  And if you're as sensitive as me to the weight gain on pred (even when I make a special effort to limit calories... yes, it's a cruel, cruel world!) it's good for tens of kilos.  Yes, that's more than ten.  Multiple tens.  You heard it here first, kids.  Which brings me to...

Advice #4:  Fluid retention.  A sexier pair of words there never was.  Pfft.  Nothing like swollen, puffy body to go with swollen, puffy joints.  Michelin-Woman is sooooo in this season.  Depending again on your level of sensitivity, you may find that the oedema (particularly in your ankles/shins) is quite bad.  People who are already predisposed to oedema - yes, you, with your heart failure, I'm looking at you - need to be particularly careful.  But yes, not your best look.  I tend to wear looser clothing (nothing that draws attention to knees, in particular!) at these times.  This puffiness (which, I should point out, does wonders for fine lines on your face!) is the main reason I live 42degrees below the Equator and still do not own a Goose Down Jacket - I don't need any more help looking as wide as I am tall!

Advice #5:  Tasty, tasty goodness.  It doesn't seem to matter how my roids are administered, but I taste the buggers every darn time.  That includes IV infusion, which I can assure you, is kinda odd.  Anyone who has had the pleasure of taking them will know it's a metallic, dirty, coin taste that can't be covered by much.  I've always found taking the tablets with something that is strongly flavoured (eg. juice, Cola, chocolate milk) and drinking copious amounts of fluid afterwards as a chaser seems to take the edge off a little bit.  Sucking on mints or lollies may help too (I've never needed an excuse to partake in Minties or Musk Sticks!), basically find whatever covers up the flavour for you and go with it.  Pred breath may not be offensive to the people around you, but by golly does it interfere with your quality of life, and no amount of teeth-brushing seems to make a dent in it! 

Advice #6:  Nasty, nasty gut.  Steroids must, Must, MUST be taken with food.  Even when they are diligently taken on a full stomach, people end up with gastric irritation, stomach ulcers, and in severe cases, oesophageal bleeding - all of which are nasty, nasty, nasty and not ideal!  If you're like me, you may get to the last of those options and then oral steroids are either dose limited to very small amounts, or not an option to you at all - which means you have to line up with your arm out to receive your dose IV.  Don't get me wrong, it's convenient if you have someone to put in your cannula and run your infusion (usually good for a lot longer than one dose of tablets!) - but also a bit of a pain in the butt that you can't do it yourself.  As someone who has to take medication now in order to eat (see point 3, eating is kinda my pastime these days, thus this tablet half-an-hour before consuming food is pretty much consuming my life!), I really don't recommend getting to this point.  If you're getting heartburn/stomach pain/chest pain as a result of eating, see your doctor and get it checked out.  Once you start vomiting blood mid-meal you've left it a little late. ;)

So they're my top six things you need to know about steroids.  They're a little more "honest" than you'll get in the product info, or from your local pharmacist - unless of course that pharmacist is me.  Then you get it pretty much verbatim. ;)  Remember though that there are a number of other important side effects you need to be mindful of, depending on whether you're on them short- or long-term, including things like Addisonian Crisis and osteoporosis - again please remember that my blog does not constitute personalised advice and I highly recommend you obtain product information from your pharmacist!

Best of luck if you have to go down this road - they're a catch-22, but steroids for many of us are the difference between being functional and being non-functional.  For me it was a pretty easy decision to make, on balance - even if they do make me grumpy, emotional, fat and puffy.  Then again, perhaps the former are a result of the latter...

* If your steroids look like the image above, it's fair to say they are not in fact steroids.

The beauty of perspective

As human beings, we can tend to get wrapped up in our own battles and dramas.  It's not necessarily unavoidable - especially if you, like me, have been stuck at home for six weeks or thereabouts with only your pain for company.  That said, a healthy dose of perspective is a very, very good thing - and mine came today during a quick outing to the supermarket.

Luckily for me, my darling mummy has been an absolute trooper during my flare.  Deep down, I think she's almost enjoyed being 'needed' as I was always the independent child - once I could drive, there wasn't much I couldn't do for myself and I think she almost felt a little bit redundant.  My pain has required lots of things to dull it, and I'm very conscious of not attempting to drive when I have taken analgesia.  That, and wearing a space boot makes it kind of difficult to drive (but that's another story).

My current collection of mobility aids - I've decided if I have a costume party any time soon I have the costumes all but ready to go as a pensioner (stick), astronaut (boot) or a leper (crutches).  Pity the latter would probably also require a limb falling off - but it's early days!

Anyway - my perspective today came on a quick dash in, dash out of the supermarket.  Mum and I bumped into the mother of a girl I was friends with at school.  She and I were great buddies in early primary school, but grew apart somewhat as we were separated by classes and made new friends.  We went to the same high school, and college (here we have a separate year 11 & 12 to the rest of high school), and while I wouldn't say we were close, she was still someone I had a lot of time for.  Any time we would run into each other we would say hello, and while I can't speak for her, if I ran into her in the street today I would certainly sit down and have a coffee and catch up.  She's been living interstate for around 10 years, and I know there would be lots to talk about.  Lots to talk about, like the fact that she has a brain tumour that the best neurosurgeons and oncologists in Australia can't treat.

Brain tumour.

Inoperable.

Cancer.

These are all things that should not be associated with somebody young and vibrant, much less someone young and vibrant who is a good person.  They always say that cancer doesn't discriminate - but you don't hear of axe murderers, rapists or otherwise questionable characters being diagnosed with something so awful, do you?

I work in health (when I'm not busy being unhealthy), and diagnoses of young people with cancer are always tough.  But the fact that this one is one that is beyond the miracles of modern medicine, that attempting to blast it with radiation or cut it all out would almost certainly be detrimental to her quality of life, well - that just hit me like a freight train.  I won't pretend that we are best friends and I am mourning the diagnosis of my closest confidante - nothing annoys me more about these moments than those reactions - but I feel for this beautiful, vibrant young woman, her family, and those closest to her.  Her mum assured me that she is in good spirits, typically fiesty about it all, but I can't help but wonder how you make peace with that at age twenty-nine.  To go from having seizure out of nowhere to having a brain tumour.  I am so grateful to whatever higher power exists that she has found the strength of character to do so, though.  

So just when I felt a little defeated by my own battles, I got the dose of reality that I so sorely needed.  While I wish I hadn't - as her misfortune to be diagnosed with something so awful is just beyond my comprehension - it was a timely reminder that playing Pollyanna isn't necessarily a bad thing.  I may be stuck with this for the rest of my life, but I intend on living with this disease as much as humanly possible, as opposed to suffering from it.  You never know what tomorrow will bring.

RA: more than aching joints

One of the many things I have learned since being diagnosed with RA is that the perception of this disease is seriously warped.  I seem to spend a lot of time justifying my disease, my symptoms, and my suffering, to people who just don't understand.  Unless you have it, love somebody with it, or study it - it seems you hear the word "arthritis" and assume it a) is an "old person" disease; and b) just some "sore joints". 

I am here to tell you that a) and b) are both FALSE.

I'm not old.   Granted, I have days where I feel like an eighty-nine year old instead of twenty-nine, but I wouldn't say I'm over the hill just yet!  And believe me when I say if I just had some "sore joints" I would have a cup of concrete each morning and get on with it - but RA is so much more than that.

Rheumatoid Arthritis is a systemic auto-immune disease.  For the uninitiated, that means that your body's immune system can't distinguish between what is good (ie. your own cells and tissues) vs what is bad (ie. bacteria, viruses, all the other stuff it should be fighting).  It affects the whole body, because it doesn't recognise any of your own cells as your own, whether those cells be in your brain or your big toe, and attacks the good for no good reason - which is where the real fun begins.  

Obviously the joints are affected - that's a given, and why this horrendous disease was called "arthritis" in the first place.  Basically the autoimmune response causes damage to the joints, which creates more fluid, which leads to swelling and pain - but underneath all that the damage can lead to deformities.  So not only do people with RA have painful joints - they have ugly joints.  I'm not a particularly vain kinda girl, but there's something quite humbling and sad about having deformed-looking joints.  

Then there's the morning stiffness - one of the 'definitive signs' of RA.  I'm not talking "I-had-a-big-workout-at-the-gym-yesterday-and-I'm-feeling-the-burn" stiffness, I'm talking at least 30 minutes (or more, in many cases) of "I-can't-move-without-the-sensation-of-someone-stabbing-me-in-my-joints-and-the-thought-of-standing-on-my-agonisingly-painful-feet-means-I'm-just-going-toreach-out-and-pop-my-painkillers-and-hit-the-snooze-button-for-half-an-hour" stiffness.  You follow?

Then we have the raft of other fun things to deal with that people just don't see - damage to the lungs, heart, eyes, kidneys, liver, the osteoporosis that often goes hand-in-hand with all the joint damage and the medications we have to take... I could go on but I don't want to scare you.  Oh, hang on.  It's a scary disease, that way too many people don't understand.  A little more of an insight wouldn't hurt...

RA means pumping your body with medication.  Don't get me wrong, some people like to try natural therapies and diet modification first, but I don't have that luxury.  My RA is a bit like me - driven to succeed, pushing the boundaries, persistent and consistent - and I really wish it weren't the case, but severe RA means you have to go with the best possible treatment to allow yourself the opportunity for the best possible outcome.  And that means drugs.

We RA patients flood our bodies with various medications - steroids, anti-inflammatories, pain killers, biologics and cytotoxics.  Right at this moment, this delicious-sounding cocktail is floating around my bloodstream.  If you were to prick my skin, there is a good chance I would bleed fluorescent green - or at least glow-in-the-dark - from the vast array of drugs that are in there*.

The first time I saw a medicine with a cytotoxic label I was 15, just starting out in pharmacy as an assistant.  I was unpacking the order when I saw the bottle of methotrexate - sealed in a zip-lock bag with a big, purple "WARNING: CYTOTOXIC" label on the outside.  Now at 15 I didn't have much understanding of what this really meant - though my Grade 9 knowledge of biology knew "cyto" meant "cell" and "toxic" meant "BAD", so the bottle of MTX went on the shelf, zip-lock bag and all.  Imagine my horror when less than five years later my rheumatologist was telling me that I not only had to take said medication out of the relative safety of the zip-lock bag, but I had to remove the bottle from the box, remove the lid, and swallow two of the tablets each week!  And don't even get me started on the side effects - copious vomiting (AKA the "Linda Blair" effect), sensitivity to the sun (also known as burning faster than your average vampire), and hair loss (tearing your hair out literally without meaning it figuratively).  TOXIC!  BAD!  GAH! 

That's probably where I should leave it.  Basically the message I am trying to convey is that there is way more to this disease than some rickety joints.  Believe me, I'd LOVE some rickety joints, if that was all there was to it.  Spread the word, people - for every person who understands just a little more about RA, that's one less conversation someone with RA has to have to "justify" their disease. 

* I know this not to be true, as a pharmacist I am well aware that glow in the dark blood would be nigh on impossible to create - but I also know it would be very, very cool.

When your invisible disease becomes very, very visible.

My mum has been there for a lot of firsts in my life – first day of school, losing my first tooth, first bra, first pimple, first job – and at twenty-nine, I was hoping the next first I would share with her would be buying my first house, or having my first child.  No, the first that we shared last week was a little different.  You see, this week it was time to make a financially small, though significant purchase.  My first walking stick.

We were browsing the range of sticks in the store, when the salesperson approached us.  “Oh, you’re too young for those.” she said, addressing my mum. “It’s for my 29-year old daughter” replied Mum, not batting an eyelid.  The salesperson tried to mask her horror as she took me in.  It was one of those moments where it feels as though the world is in slow motion, an uncomfortable silence where crickets chirped, pins dropped and if it were more than a moment, the ticking of the seconds on the clock above my head would’ve been like gunshots.  

You see, I was diagnosed with Rheumatoid Arthritis almost eight years ago.  I was a vivacious uni student who loved life, and all the adventures that came with it.  It was during a uni lecture on RA that I sat with my friends, taking notes, and listening to the lecturer reel off the symptoms.  Initially I took down the lecturer’s words, but after a few symptoms were mentioned – morning stiffness, joint swelling that affects both sides of the body, fatigue – I felt my heart sink.  It took less than a month for me to be officially diagnosed, and start taking the cocktail of medications that were meant to minimise the damage from the auto-immune disease, while giving relief from the symptoms.  There have been good days and bad days in the past eight years, but in recent times the disease has had the upper hand, and left me barely able to walk.  It was for that reason that it came time to bite the bullet and buy my first mobility aid.

So back to the uncomfortable silence in the (now, somewhat uncomfortably) small shop.  I felt the woman’s eyes cast over my body.  I’m not sure she meant to, but it felt like she was both boring holes in me with her curiosity and pity.  Perhaps I’m not as evolved as my fellow RA patients, but I am incredibly self-conscious about the way my body has been ravaged by this disease and the drugs.  She studied my face, no doubt getting lost in the blackness of my eyes, after months of less-than-adequate sleep, which has inevitably led to bags under one’s eyes that would not be permitted as cabin baggage on any domestic airline.  I had hidden my red, sausage-esque fingers, attached to swollen and angry hands, in fingerless gloves.  My knees, ballooned to three times their normal size, were hidden under tights and a below the knee-length skirt.  Normally I’m a dedicated jeans girl, but a) my balloon-esque knees don’t fit in the legs of my jeans; b) my inflamed and fluid-filled hips scream whenever I try to wear anything with a non-elastic waistband; and c) my rapid weight gain from medications used in an effort to reduce the inflammation that is attacking my body has apparently increased my waist circumference by one, if not two sizes.  For all intents and purposes, I looked just like any other twenty-something she would have encountered that day – though, from her reaction, I’m guessing I was the first buying a walking stick.

I selected my stick from the rack (incredibly disappointed it didn’t jump into my hand as I extended it, a la the broomsticks in Harry Potter) – a gleaming black stick with multicoloured pattern, babbling away about how the pattern would mean that my new stick would go with everything in my wardrobe.  Never mind the fact that a person who is not yet eligible for the age pension shouldn’t have to use one.  With the swipe of my card, my RA transitioned seamlessly from an invisible disease to a very visible one, with the stick undoubtedly becoming the justification, explanation and validation of an illness that affects almost every aspect of my life.  It may be a sign that the disease is winning, but I can assure you that the stick will be folded up and packed away as soon as I can manage without it.  Until then, my pretty stick and I are going to do our best to bring sexy back to RA – one step at a time.

Rheumatoid Arthritis is a double-edged sword.  It makes me stronger, more determined and more stubborn than I have ever been.  But its invisibility is a curse.  Unless people know me, and know what to look for, I am an ordinary (though extraordinary, in my humble opinion) girl.  I meet dignitaries and politicians and have to mask my grimace as they shake my hand in that firm, confident way that all but crushes my knuckles.  I noticed people silently judging me as I limp around the supermarket, or as I stop to gather my breath (and courage) to continue on my journey.  My disease is invisible, but that certainly doesn’t mean it’s not real.  I feel my friends slip away as I am forced to turn down invitations – because either I’m exhausted, or my symptoms are too overwhelming, or I am simply too poor as I’ve been off work without pay for too long.  I watch the pained expression on my Mum’s face as another needle is plunged into my body, as another drug drips into my vein, as another glimmer of hope fades away.  The pain I see in her eyes is what breaks my heart the most.

This Sunday is Mother’s Day in Australia – and as a gift to her this year, I pray, somewhat selfishly, that I am better.  Because not only have I had enough of my invisible disease slowly destroying my hope, but I have more than had enough of it inciting the maternal guilt that my mother carries for having passed 50% of my genetic material to me.  While RA runs on both sides of my families, it has mercifully skipped my parents (thus far) and landed a king-sized helping in my lap.  I pray that this Mother’s Day I am well enough to cook my darling Mumma a meal, or at least sit through one with her without having to excuse myself for more narcotics or to lie down.  I want to give my Mum one day – or at least a part thereof – where she can rejoice in all the wonderful things she has done and passed on to her children.  Her selfless generosity, her kindness, her willingness to sacrifice for her children, her empathy, her wicked sense of humour, her perfect complexion, her ability to defy the laws of aging, her laugh, and her ability to innately sense what will make me feel better at any given moment.  

So to Rheumatoid Arthritis – you win this battle.  But because my Mumma makes me stronger, holds enough hope for the both of us when I lose mine, and willingly stands by me through all the rubbish you throw at me – I will win the war.   

Happy Mother’s Day to all the Mums out there, and an extra special wish to my darling Mummy Christine – you are by far the bestest Mumma in the world, and I love you to the edge of infinity and back again. 

________________________________________________________________________________

This is a picture of my stick - to prove that they don't need to be un-cool.  Hell, the super-awesome Dr. House has one!  You can find your own sexy stick at  Switchsticks' Australian site or a number of great online and in-store retailers.  

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!