Twelve months on...

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

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

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

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

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

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

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

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

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

Progress report...

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

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

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

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

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

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

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

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

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

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

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

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

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

Grumpy Cat is not impressed by what she sees.

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

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



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

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.

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

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

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

Pain in my... Well, everywhere.

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

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

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

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

Things I love: CND Vinylux

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

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

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

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

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

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

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

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

Sometimes it's about more than your physical wellness.

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

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

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

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

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

Sage advice, right there.

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

When people care... too much.

I am a very lucky woman. 

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

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

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

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

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

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

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

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

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

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

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

Unexpected compliments...

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

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

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

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

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

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

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

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

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

Not my hands, but infinitely incredibly hands nonetheless.

Medicine and music.

Thought for today.

The often-overlooked toll

A comment by an anonymous reader of my blog got me to thinking about the toll having RA takes on you.  We - and our health care providers - acknowledge this toll and understand why it exists, but all too often we forget the toll that all of this takes on the people we love and who love us.

There are a huge variety of emotions which accompany this disease when it's you it's affecting, you in pain, you feeling helpless.  That said, it's also incredibly important to recognise and acknowledge the emotions that  those around you are experiencing.

Guilt is a big one.  I know that deep down my parents experience some parental guilt, knowing that RA runs in both their families and they have been fortunate enough to not experience it themselves.  Guilt that their daughter has won the genetic lottery and landed RA.  Guilt that they have produced one incredibly fit, healthy, intelligent and compassionate child; and one with RA.  My brother too feels guilt that I am in pain on a daily basis, though he's not quite as adept at expressing his emotions.  I know he feels guilt though because every now and again he will tell me that "It's not fair.".  

Helplessness is a recurring theme for loved ones, simply because RA seems to create incredibly strong, he independent people.  We are a different breed of human being, carrying on until we can carry no more.  We're also a very staunchly proud group of people, which means we a) tend not to ask for help, and b) tend not to accept help when its offered.  While I get it (heck, I'm guiltier of it than most people!), sometimes the offer of help is your family, friends and loved ones' way of saying "Please let me do something, I feel so helpless".  Remember that a little concession on your part can help them to feel more useful, which allows them to be a better support for you.

Anger is highly present in those who love someone with RA.  It also mixes in with Grief, and the two tend to go hand in hand.  We have all been (or are still going) through a grieving process, acknowledging the changes in our bodies and lifestyles.  Don't get me wrong, even after almost 11 years I still have moments where I have to allow myself to grieve for the life and lifestyle I've lost.  I'm not a psychologist but I think it's healthy.  I still have days where I am angry that I can't play the violin or netball any more, but at the same time my diagnosis made me more acutely aware of the things that I have gained as a result.  Swings and roundabouts.

Pride is an emotion that you don't always see, but I can guarantee it's there.  Little achievements - hanging the washing on the line, cooking dinner, drying hair - mean very little to anyone else, but to the people who truly love you, the opportunity to celebrate the little victories, no matter how small, allows them to feel as though they're joining you on the journey.  Keeping them involved allows them to feel useful, as well as providing all-important support and company for you!  I know that my family and close friends are very proud of what I achieve on a daily basis, which in turn makes me proud that I am making them proud, and so on and so forth.  

Well, that's all my thoughts for now.  I have caught my first head cold of the season and my head is full of things other than brains and useful grey matter, which means an early night is called for.  Good night all!

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!

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

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

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

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

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

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

Day Nine...

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

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

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

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

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

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

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

Day One...

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

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

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

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

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

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

One day down - eighty-three to go!

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

Change your view, change your world

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

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

The journey starts here...

So this is Christmas...

.. and what have you done?
Another year over - a new one just begun.

This is a question I seem to ask myself every year.  I cannot believe 2012 is nearly done and dusted.  It feels like only yesterday we were celebrating the start of 2012 - and here we are, about to do the same for 2013!

It's Christmas Eve Eve here in Australia.  I've wrapped all the presents, done my share of the "Christmas Cooking" and cleaned the house in anticipation of the holidays.  I say holidays as a plural, however I have exactly one day off work, so I guess the 'holidays' are not as relevant to me as they are to most!  Not that I couldn't do with the break, though...

It's been a busy month.  Work has been crazy (not in the DSM-IV psychiatric evaluation sense, but rather the run-off-our-feet-battling-bed-block-and-sick-people-coming-out-of-our-ears sense), with little to no time to worry about RA.  That said, it hasn't been a healthy month.  First up, I had a ripper flare that required two steroid infusions to bring under control, because the 50mg a day of prednisolone wasn't cutting the mustard.  Then, a big old stomach ulcer reared its head - so, after an OGD (my first - I always knew the day would come but I had put it off!) the diagnosis of a pre-pyloric ulcer wasn't exactly a surprise.  The down side was that it bled with the slightest contact with the camera, which means 5 weeks off NSAIDs, with minimal steroids and huge doses of PPIs and H2As to try and induce some healing so they can biopsy it.  It's gonna be a long few weeks...

The minor surprise that came with the scope was the confirmation that I have Sjögrens.   My eyes have been dry and easily irritated as long as I can remember; my mouth is always dry as a chip, and now it turns out my GI tract is 'obviously' that of a Sjögrens patient.  Turns out I am collecting auto-immune diagnoses like some people collect coins or stamps!

So what have I done this year?  I have gotten two steps closer to my post-graduate qualification.  I have been published on Mamamia, which I won't lie - it was a wonderful day for me.  To have RA recognised in public on a site that is visited by thousands of women every day was a fantastic PR boost for people everywhere with autoimmune diseases.  Even better is the feedback I got as a result - friends who told me they wept, shared it with their family and friends, and one who sent the link to her in-denial-with-RA friend (who now takes her meds, realising she has it pretty good!).  The message is filtering out, ever so slowly.  The messages I received from the wonderfully inspiring Christine Schwab and Barbara Mockford who thanked me for sharing my story, and encouraged me to continue to share it with the world.  On a personal note, I have gotten myself to a far better headspace and continued to work towards achieving more of my personal and professional goals.  Looking back it doesn't seem like much, but as any RA patient will attest - sometimes just opening your eyes and getting out of bed feels as big an achievement as winning a Nobel Peace Prize!

Despite the pain, the struggles and the treatment failures, 2012 has been a good year.  This Christmas will be a quiet affair, with just my immediate family.  And I can't wait.  To spend a quiet day with no work, minimal stress (hey, someone has to cook lunch!) and surrounded by the people I love most in this world is my idea of the perfect day.  Irrespective of my pain, I know it will be a wonderful day - and I hope it is the same for all of you.

Wishing you all the merriest of merry Christmases,
and a safe, happy and healthy 2013!