What is Lupus?

So I throw this word around all the time and I’m aware that not a lot of people are aware of what it actually is.  This is a problem we face: Lack of awareness as well as lack of research.

Did you know : They haven’t really come out with something new for Lupus in 40 years!

Did you know : There are not proper death statistics for Lupus patients as you don’t’ die from Lupus you die from something Lupus did to your body, like kidney failure.

Quite a while ago I had a family member in her 20’s who died from Lupus complications.  I must admit I knew nothing about it except that it caused bruising.  Looking at it now, it must’ve been absolutely awful laying there while your body, specifically your kidneys shutting down.

So what is Lupus?

There are different kinds of Lupus. The most well-known are :

Discoid Lupus: It affects your skin and your joints

Lupus SLE: It attacks your organs (this is the one I have)

Lupus is an insane backwards disease.  Your immune system is actually overactive.  It acts as though it’s attacking a virus/infection except you don’t have any. 

So it then starts attacking your organs and can cause some serious complications.  Think of anything in your body… anything and Lupus can attack it.  Obviously I would get a disease that it is stupid because let’s face it… Attacking your own organs is damn stupid.

There are various ways of treating it, just basically to bring down your disease markers.  I personally have to use chemo tablets every day because it suppresses your immune system.  Yup you have to SUPRESS your immune system.  I cannot take anything to boost my immune system or my disease markers will spike.  When my disease markers spike,  I am put in hospital for a 3 day IV steroid infusion.  You basically have to become a germaphobe.

The way I explain Lupus is “take the worst flu you have ever had and times it by 100 000” and you will kind feel what it’s like.  When your disease activity is high you can hardly get out of bed.  You are constantly exhausted no matter how many times you sleep. It’s a crappy, horrible feeling.

My little niece had a cold and me having a little to none immune system picked it up.  FOUR WEEKS and two chest infections later I was better.  We pick up diseases so quickly because we have to keep our immune system low but it also means it takes longer to get better because we don’t really have an immune system to fight back.

Thankfully my rheumatologist does not believe in making you live on copious amounts steroids like prednisone.

I’ve been through excruciatingly awful times.  Things like needing a blood fusion.  Umm for what? Why? It was reflected in my blood.  You are supposed to have 5 pints of blood but I only had 2. Go figure!

It has by far not been an easy ride to get to where I am.  I have been so sickly I honestly thought I wouldn’t live much longer.  No one knew.  I became a recluse.  I hated making plans with people because on the day I could be having a flare and not be able to get out of bed.  It was both good and bad.  Believe me, being chronically ill shows you who your real friends are.  Who really loves you  Depression comes with this disease.  You’re faced with your mortality.  There is no cure for Lupus.  While I hear stories of people that got it under control I have also seen as many people die.  Facebook groups have become scary for me.  All these young beautiful people dying.

I was put on disability.  This helped tremendously because I could focus on my health.  Stress and anxiety at high levels were proven to have adverse effects.

I gave myself a month to grieve not being the Tracey I was.  I then gave myself a month to try things to find out what my new normal was.

I started doing really really well.  My disease activity was never as great!

However of late, and I attribute this to incorrect medication etc. (not from my rheumatologist) which kicked me back into depression my disease activity started spiking.  It was picked up in hospital when I was there for pain management but it wasn’t too high so we weren’t too bothered.  However on a visit to ER for pain my disease activity had shot up massively and the ER doc told me to see my rheumatologist immediately

This will be a battle for my life for the rest of my life. I can’t imagine what it’s like for those without medical aid.  My heart truly goes out to them.

People always tell me “but you look so good!”  I believe in dressing up and showing up with a smile.  I cannot do the victim mentality. I just cannot. Also Lupus is an invisible disease.  You cannot look at someone and say “Oh she has Lupus”.  I put my make up on as my war paint and go out and face the world.  When I get home I can get put on my pyjamas and curl up into a ball because I’m probably exhausted from being out.

Well I look at like this… the only thing that can kick my ass is me!

If you have annnny questions please ask.  I have only covered some information here!  I will be doing a Lupus awareness blog post at a later stage where I will list the symptoms we go through but also what YOU need to look out for.

The next post will be about Fibromyalgia.  The evil pain disease. OOOOH I hate this disease!!!!

Peace, Love, Happiness and cappuccinos!