Rheumatoid Ninjas

You know how stealthy ninjas can be.

Turns out my RA can be just as stealthy.

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

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

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

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

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

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

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

Progress report...

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

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

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

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

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

Has this ever crossed your mind?

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

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

A scan of the baby.

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

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

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

Rheumatoid Arthritis.

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

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

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

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

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

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

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

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

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

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

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

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

Grumpy Cat is not impressed by what she sees.

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

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



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

Things I love: clean skin!

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

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

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

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

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

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

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

Wishing for a cure.

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

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

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

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

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

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

_____________________

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

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

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