Hair Raising Awareness

While i'm neglecting my blog writing, lupus advocate awareness duties for NanoWrimo this month I thought i'd quickly pop in and say hi and post the video of my husband Mark shaving off his beloved golden locks for Hibbs Lupus Trust here in the UK.  My husband loves his hair very much, third only to me and the cat and it's seen various formations over the thirteen years i've known and loved him (naw! i know) so a precursor to his epic head shaving (which raised over £300 by the way) a few hairy (or hurrry as Mark would like to say in his Lancashire tongue) pictures of Mark from over the years as an ode to his sacrifice.  Keep scrolling for the video!

An open letter to Lupus

Dear Lupus,

We've lived together for nearly five years now, our cohabitation uncompromising and you, the uninvited guest illegally squatting in my world, my safe haven.

For all those New! faces

A very good morning to everyone today.  I know it's unusual, me being such a busy and tired little lupie and all,  for you to find a blog post from me so soon.  There are a few simple reasons for this.

Keeping up appearances

Lupus patients can be the most stubborn people on the planet, myself included. Notorious for not necessarily taking the best advice, making the most of any sort of energy - even if it means we're twice as tired at the end - refusing to accept ourselves as different and cherry picking when our condition should be taken into consideration for our actions or circumstance (chronic patient prerogative).  Not all necessarily bad things, if anything it gives us a sense of balance in a life that is slightly off kilter.

King of the Castle

As I trundled my way to work on this beautiful sunny Sunday just past, I took in the familiar sights and sounds of the delightful city me and my husband are lucky to call home. Many things about that walk were the same, my legs were stiff, muscles in my arm sore and I felt the usual foggy headedness that plagues me every morning in the hour and half before my medication kicks in. But there was one thing that had significantly changed, the air was fresher, the sky bluer and as if someone had thrown the gates opened wide and beckoned us in like old friends, the whole city became a world of opportunity, that which finally opened Saturday when we were told we're eligible for a mortgage.

Changing lanes

If past three years have taught me anything, then I'd have to say it's the ability to become highly adaptable. Life doesn't stay the same for anyone for too long, but with lupus you learn to live life not so much on a knife edge, but with eyes in the back of your head prepared for any sudden change, whilst at the same time looking forward to what is normality.  Less life in the fast lane and more life facing the on coming traffic.
These past few weeks again have given me the opportunity to use my chameleon like powers of adaptability and begin some new adventures on a different medication.
For multiple reasons my consultant and I have decided to put me on the slightly friendlier drug Azathioprine. Easily done yes? No.

Shade Hopper

Yes, I'm still alive (just about in the form of lupie torture that is is this heat!)
Whilst blog activity has been minimal and absence notable, it's a far cry from my daily, non-cyber related life.
So this month has been eventful to say the least, not including all the additional calories burnt hopping like a mad hare from one side of the road to the other to find the smallest glimpse of shade to walk in. I've also been making sure I remain permanently glow in the dark by applying industrial strength and ridiculously expensive factor 50 sun cream to my entire body everyday (the price we have to pay to stay the colour of a milk bottle) or as my 84 year old Grandad summed up last week in his concerned voice "ooooh, you're very pale aren't you".
My medication has changed too, the remnants of my final Myfortic prescription has been very excitedly shoved right to the back of my overflowing medication box and a box Azathioprine sat pride of place in what is vastly becoming a home  pharmacy. The downside, my poor veins hammered in weekly blood tests to check I'm tolerating it and my kidneys aren't going haywire again. More adventures on this coming shortly.