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.