Inspiration: Don't Quit.

Survival Tips: Steroids

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

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

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

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

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

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

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

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

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

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

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

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

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

The beauty of perspective

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

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

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

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

Brain tumour.

Inoperable.

Cancer.

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

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

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

RA: more than aching joints

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

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

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

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

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

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

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

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

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

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

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

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

When your invisible disease becomes very, very visible.

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

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

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

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

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

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

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

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

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

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