Rheumatoid Ninjas

You know how stealthy ninjas can be.

Turns out my RA can be just as stealthy.

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

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

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

Progress report...

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

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

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

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

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

Wishing for a cure.

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

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

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

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

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

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

_____________________

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

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

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

Move it, or lose it - sometimes.

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

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

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

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

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

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

When people care... too much.

I am a very lucky woman. 

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

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

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

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

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

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

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

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

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

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

Medicine and music.

Thought for today.

The three things nobody tells you about RA.

When I was diagnosed, I was in the middle of a university degree, learning about RA.  'Twas incredibly fortuitous really - it definitely sped up the diagnosis process!

The text books about RA gave me a fair idea of what I was in for - granted, they didn't paint the picture in particularly accurate colours, but I knew I was gonna have sore joints to rival people in their 90s.  But the longer I live with Arthur, the more I realise nobody had ever told me about him.

Night sweats

They warn you about a persistent low-grade fever, but they don't warn you exactly how feverish things can get!  Boy, are these fun.  (I know sarcasm is considered by many to be the lowest form of wit, but I kid you not when I say that sarcasm is often the only thing that saves my sanity.)  I always know I'm in for an especially hellish kind of day or three following these.  Case in point - it is now single figures overnight here, which meant the addition of a blanket and changing into warmer pyjamas last week.  On Tuesday night, I found myself in a pool of my own sweat, sitting on a towel on the couch under the air conditioner.  Still burning up. 

Muscle aches

It all makes sense really - the hip bone's connected to the back bone;

The back bone's connected to the neck bone,

The neck bone's connected to the head bone... and all 'round dem bones is muscles!  

I have learned that once a particular joint has started to flare, you can almost guarantee that the tendons, ligaments and muscles that surround it will soon start to hurt, and then all hell breaks loose.  Between my physio and my massage therapist I try my best to keep the soft tissue soft, so that the bones can do their thing.  But 'arthritis' still conjures up images of sore bones, with no warning that the rest of your body won't be any less painful!

Losing fat

This sounds awesome, but it's not quite that exciting.  Because one of the places you lose fat from (without any effort, may I add) when you have RA is the bottoms of your feet.  Yes.  You read right.  The. Soles. Of.  Your.  Feet.

Of all the places a girl wants to shed a bit of extra adipose, the feet are the least of our worries.  But once it starts to go, it's actually very painful and makes life difficult.  All of a sudden I can feel my bones not only grinding against each other, but against the floor, the soles of my shoes, the whole thing.  Not ideal - perhaps I can lobby the extra adipose on my hips to relocate a little further south!  (I have been purposely building my stockpile for just this purpose!)

I often wonder if there were a book of what living with RA is really like, if people would be more or less accepting of this diagnosis.  At the moment, many people seem to think it's just some "achy joints" and not worthy of sick days - blissfully unaware that the real picture, the real life we live, is actually much more than a few aches and pains.  I won't lie, it's been so long since I got a good night's sleep that I am almost delirious with the exhaustion - and if someone offered me a painless existence in exchange for my soul, I would trade it in a heartbeat.  But my diagnosis?  If my having RA saves my brother the pain, the heartache, and the turmoil - then I wouldn't change a thing. 

Ulysses the unpleasant.

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

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

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

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

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

Would you like to feel my pain?

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

This guy is my hero.

Day Nine...

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

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

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

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

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

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

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

Life envy

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

Mia writes:

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

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

And I hear you, Mia.

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

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

Steve Furtick was onto something.

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

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

In 2013, I will...

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

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

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

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

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

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

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

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

Enough is enough is enough...

_________________________________________

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

Don't you do it  

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

You can do it
 

Tell him to just get out  

Nothing left to talk about  

Pack his raincoat, show him out 

Just look him in the eye and simply shout
 

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

I can't go on no more, no 

Enough is enough is enough I want him out, 

I want him out that door now

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

_________________________________________ 

Dear Arthur,

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

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

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

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

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

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

Another stint on the steroids, another sleepless night.

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

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

Things About My Invisible Illness You May Not Know

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

Rollercoasters... do you scream?

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

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

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

And then, the clincher. 

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

Boom.  That's rock bottom, right there.

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

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

Time flies...

... when you have a deadline to meet.

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

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

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

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

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

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

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

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

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

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

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