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!

Thirty things...

It's Invisible Illness Awareness Week - but don't worry if this is news to you.  It's an awareness week that hasn't caught on in Australia just yet, outside those of us who have invisible illnesses.  Give me twelve months... I hope to change that!

Anyway, one of the activities was one I've done before - sharing thirty things that other people may not know about my invisible illness.  While it's not a new thing for me, I decided I'd answer the questions again (you can find my answers from 2012 here) and see what another 12 months living with my mate Arthur had taught me.

Read others' thirty things and submit your own by visiting http://invisibleillnessweek.com/submit-article/30-things-meme/ - it shows that out there in this big, wide world there are people living scarily similar lives to our own!

1. The illness I live with is: Rheumatoid Arthritis.  At least, that's my primary diagnosis!  There's some elements of other autoimmune diseases that creep in there from time to time, but RA is the major enemy in the war.

2. I was diagnosed with it in the year: 2003.  I was in my third year of uni and had no idea exactly what was in store!

3. But I had symptoms since:  In hindsight, 1996 - but nothing so serious that I would have done anything about it.

4. The biggest adjustment I’ve had to make is: learning to let go of my pride and asking people for help, and acknowledging my limitations!

5. Most people assume: I must have a very mild version of RA, given how rarely I let it get in the way of my life.

6. The hardest part about mornings is: lifting off the doona, and knowing exactly how having my feet hit the floor will feel.

7. My favorite medical TV show is: still Grey's.  Always Grey's.

8. A gadget I couldn’t live without is: my Kindle.  I didn't realise exactly how much I was avoiding reading (one of my favourite ways to relax) as a result of the pain in my hands and wrists. 

9. The hardest part about nights is: positioning myself in bed in such a way that I can get comfortable enough to sleep.

10. Each day I take __ pills & vitamins. (No comments, please) Over 30.  Add to that injections and eye drops, and we're getting into dangerous territory! I'd have a lot more free time if I wasn't trying to keep up with medication!

11. Regarding alternative treatments I: acknowledge that many things have their place, but still believe they should only ever compliment prescribed therapies.

12. If I had to choose between an invisible illness or visible I would choose: (I should add, I checked what I wrote last year, to see if my feelings had changed) Invisible - on the days I feel good, I hope that people can forget that I have RA when they look at me.  Other days I would say visible.

13. Regarding working and career: I'm way too ambitious and driven (not to mention stubborn) to let a chronic illness diagnosis get in the way of my plans.

14. People would be surprised to know: that I set my alarm for a couple of hours before I need to get up, so I can be stretching in the warmth of my bed and be able to move when its time to get going for the day.

15. The hardest thing to accept about my new reality has been: that it is, in fact, my new normal.

16. Something I never thought I could do with my illness that I did was: relocate myself to a different state, get a new job and live thousands of kilometres away from my support network.  As my disease progressed, I had to acknowledge that I needed those people closer to me, and moved myself back home.

17. The commercials about my illness: don't make it to Australia - I'm not sure if this is a good or a bad thing!

18. Something I really miss doing since I was diagnosed is: make music.  I said it last year, I'll say it again - I miss being able to express myself through music.  Now my hands won't do what they are told, it seems as though I've lost a big chunk of my identity in the process.

19. It was really hard to have to give up: netball!  I'd kill to be able to play again!

20. A new hobby I have taken up since my diagnosis is: commentating motorsport.  Fell into it by accident but actually really enjoy it - on the days my cricoarytenoid joint is behaving itself!

21. If I could have one day of feeling normal again I would: start the day by rolling straight out of bed - play music all day, and play and umpire a couple of games of netball at night.

22. My illness has taught me: to celebrate the little victories.

23. Want to know a secret? One thing people say that gets under my skin is: "You're limping.".  Stating the obvious doesn't achieve anything, and in fact it reminds me that I'm not doing so well.

24. But I love it when people: show genuine thoughtfulness.

25. My favorite motto, scripture, quote that gets me through tough times is: "A true optimist never lets life get in the way of living."

26. When someone is diagnosed I’d like to tell them: don't be too proud to ask for help.

27. Something that has surprised me about living with an illness is: how exhausting it is.  All of the things that once came very easily now suck the energy from me in no time at all.

28. The nicest thing someone did for me when I wasn’t feeling well was: cook for me, come over and do a little bit of cleaning, and by doing this made me feel less guilty for not doing any of it myself.

29. I’m involved with Invisible Illness Week because: I can't top my answer from last year.  If there was more discussion about invisible illnesses, then those of us with them might start to feel less invisible.

30. The fact that you read this list makes me feel: proud that our voices may one day be heard.

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.

___________________________

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.

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!

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)...

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. 

Dear Santa...

I've been very, very good.  Arthur; not so much.  That said, a question I get asked annually (and not just by one person, may I add) is "What would you like for Christmas?".  

Every.  Single.  Year.

I get it.  What do you get the person with everything - Rheumatoid Arthritis included?!  I know I'm not alone - once you start earning your own money, live in your own place and pay your own bills, there's an expectation (realistic, too!) that you will buy much of the stuff you want and or need.  I am here to tell you that yes, that may be true - but there are plenty of 'gifts' you can buy for someone with RA or pretty much any other chronic illness that will let them know that you both appreciate them and really put a lot of thought into your choice.  

While for me this is pretty much the 'perfect' gift I recognise it may not be the same for everyone - but hopefully my ideas will give you a cracking idea for something for Christmas, a birthday, or a just-because-I-care-gift!

Thanks to RA Guy (www.rheumatoidarthritisguy.com) for sharing this scarily accurate account of ChRAstmas!

Pamper me please!
While massages, mani/pedis and facials are an intensely personal thing, nothing (and let me say this loudly, nothing) comes close to vouchers for a shampoo and blow dry for me.  I have way too many days where drying, straightening and styling my hair is a herculean effort - so for special occasions, or periods where I am particularly sore and have neglected my mane, having a professional do the hard work is delightful.  Let's face it - someone else drying your hair is one of the best parts about going to the hairdresser, but since my hairdresser started using the L'Oreal Steam Pod I can get about 5 days out of a salon blow dry, and it leaves my hair nourished and feeling like I should be in a rival shampoo ad.  Amazing!  (I should add, if someone who loves me reads this and is still clueless as to what they should get me for Christmas - please go see my friend Alera at Lush Hair Seaport and buy me the retail version of the Steam Pod.  I would love you forever - though vouchers for shampoo/blow dry/Steam Pod would be pretty amazing too!)

Other gifts that you might like to consider:
The gift of normalcy
I'm not going to lie - on days when I feel like utter rubbish, the gift of normalcy would go down a treat.  Think a 'voucher' for picking your friend up for lunch (not driving is such a luxury when you feel a bit sub-par), or even just out for coffee, ice cream, or if they're up to it, a drive in the sunshine to a destination to catch up.  

The gift of assistance
We've all let our gardens get out of control, or the lawns grow to jungle-like proportions, or ignored the vacuuming/dusting/cleaning/ironing when we're not feeling our best.  Again, the services of a professional cleaning company for a quick once-over is a fabulous gift for the energy-challenged, or as a welcome home gift from a stint in hospital.  If you're willing to get your hands dirty, giving a card with this promise is also a lovely gesture - though I know my pride will often get in the way of taking a friend up on the offer. 

The gift of comfort
A girl with chronic pain can never have enough wheat packs, comfy cushions/pillows, and soft rugs/wraps.  As we speak I am propped up on half a dozen pillows in bed, with a heat pack around my neck (a long one so it doesn't fall off), one down my spine and another long one around my hips, and a throw rug over my legs.  I'm totally rocking my inner Nanna, but by goodness there's a comfort to it!  Products like this Sunbeam Heated Throw Rug, the Sunbeam Quilted Massager with Heat, and the Sunbeam Back and Neck Heat Pad have long been on my wishlist for obvious reasons!

The gift of distraction
Everyone has their 'thing'.  Mine is having brightly coloured nails (to distract people from my swollen, red and angry-looking hands.  For this reason, I always welcome the gift of a voucher for nails (think the long-lasting gel polishes that are all the rage at the moment, or the nail foils that last around a month on toes), or a fabulous new season colour that is all the rage.  I am a big fan of stalking friends' Pinterest pages for inspiration (and if you haven't signed up for Pinterest yet, be prepared to get addicted)!

The gift of healing
I have found a few bits and pieces in my time that help me to heal and strengthen my body - and this one is two-fold.  This awesome Starlight Foundation Stress Star not only helps improve and maintain my grip strength, but also supports a very worthy charity in the process.  I would also like to point out that I would know someone truly loved me if they gave me hope for a cure for Christmas, by donating to Arthritis Australia!  If your gift-ee is an all-round charitably-minded person like myself, donations to the likes of Unicef, World Vision, the Starlight Foundation, Make-A-Wish, Canteen or my personal favourite, the Inspire Foundation are all very worthy gifts for your friends, and the world!

I should add - if you have given or received a gift that has completely shifted the Earth on its axis (or perhaps just brought a very big smile to the face of the receiver) please feel free to share it in the comments below!

Long time, no see...!

Ahh, it's been a while.  Again.

Life gets busy sometimes, doesn't it?  I am often guilty of taking on too much - attempting to do too much.  I know that anyone who has RA will be able to identify with it, but I am sometimes too naive for my own good.  I have a few consecutive days where I would rate myself as 60% or better, then I get excited and do too much, which sends me spiralling back to where it all began.  It's a silly thing to do, and I know it, but it doesn't ever seem to stop me!

I spent the weekend in Brisbane, soaking up the gorgeous sunshine and an extra 10 degrees on my usual days, and celebrated a dear friend's wedding.  I have never seen her look so proud and gloriously happy, and I was there for her graduation!  I am so thrilled that such a kind, generous and loving soul has found someone who compliments her so beautifully, and I was so honoured to be able to share their special day.

The wedding was obviously a high point of my weekend, but there was one other thing that was wonderful about my weekend - I read.  Not for work, not for uni, not to learn, but for the sheer pleasure of reading.  And boy, had I missed it!  I spend so much time reading protocols, guidelines, textbooks, journal articles and other studious media that I had quite honestly forgotten how wonderful it is to immerse yourself completely in a book.  I deliberately took a book with me that I knew would be light and enjoyable - "The Younger Man" by the lovely Zoe Foster - and after devouring it in a few hours, had to find something for the plane home.  I was pleased to find a book that I had seen a review for and hadn't yet had a chance to track down - "Band-Aid for a Broken Leg - Being a Doctor With No Borders (and other ways to stay single)" by Damien Brown.  

I am halfway through and if not for having to go to work, I'd have stayed in bed this morning (under my doona) and finished it off.  Check out the many, many positive reviews and track down a copy of the book if you can - it's a fascinating insight into Medecins Sans Frontieres and the marvellous work they do, not to mention the mental toughness of the people who do the work.

On that note, a big weekend (including wearing heels and walking about 20km) means I am utterly exhausted and ready for sleep.  Bring on next weekend, and my first opportunity to sleep in!

A change of pace.

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

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

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

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

Survival Tips: Steroids

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

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

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

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

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

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

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

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

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

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

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

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

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

Survival Tip: Looking Your Best

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


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

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

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

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

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

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

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




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

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

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

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