Friday, 15 August 2014

The Reality of my Review Days ...What is the Next Step?....Part 2

Are we all ready for part 2....this is where the fun really begin....

I am still in the waiting room...

I have now been here for half an hour. I forgot my book which is extremely frustrating as I am now bored out of my brains. I do enjoy the people watching though! One gentleman has run into someone he used to work with years ago, it's nice to see an old connection between two people come to life again. It makes everything seem a little more positive....bodies can fail but connections are always real.

The chairs are seriously uncomfortable too! For a rheumatology clinic, where we all suffer from arthritic conditions, they really should reconsider their furnishings! By the time my name finally gets called my bottom is so numb I have to giggle - a nervous giggle. Big deep we go!

Thursday, 14 August 2014

The Reality of my Review Days ...What is the Next Step?....Part 1

Hi All,

So it's that time of year again when the needles are a plenty and the heart palpitations are relentless....the dreaded hospital review....and guess what? This time I faced it alone! I had my big girl pants on yesterday, took a deep breathe and got stuck in....well I might as well right?

So there I am at 8am, no make up on in case they want to check my skin, no nail varnish on (a cardinal sin in my book) because my nails have been showing signs of immune system damage, and I am wearing really old clothes as I can't really be bothered dressing up nicely! I feel positive even though I am pretty sure, as with all these things, that my body is on a mission to bring me down! This lasts until I get the bus....

Friday, 8 August 2014

An Honest Look at Diagnosis

Hi All,

I have been reading a lot of interesting articles of late about dealing with diagnosis; great articles, but ask yourself if you can ever be prepared to find out you will never be well again. Take a second and really consider that notion. You know you are not well that is a given...why else would you be sat in a hospital room, you know the news is not going to be great so you have prepared yourself which probably involved the words "you will get through this"....then the moment comes when you find out that you simply wont get better...for every day of the rest of your life you are going to be ill.

Wednesday, 30 July 2014

5 Things I Want You To Understand About My Life With Lupus

Hi All,

I am going to be stepping up the blogging from now on...I have a bit more time in the evenings and life has somewhat settled down. So I will be back with vengeance and continue on with my mission to begin a new life as open and honest as possible about the driving force that is Lupus....oh the joy!

Thursday, 24 July 2014

Live For What Soothes The Soul and Other Musings

Hi All,

I seem to only be posting weekly now, I shall have to get better at that so my apologies. The trouble is it is just so damned hot at the moment, my energy levels are at zero and when you are writing all day coming home to write is not really working right now. Maybe once this heatwave is over I can get back to the serious daily posts....not the subject of the posts....just the regularity of them.

Thursday, 17 July 2014

CNS Lupus...Or As I Call It....Where Did My Mind Go.....

Hi All,

So I have been having fun with my memory this week...we are not particularly friendly at the moment...nor are we on speaking terms...ever since I found myself in the men's toilets at work because I couldn't make out the signs on the door. Yes that is correct...the little lady sign did not make any sense to me and then again neither did the men' then I tried to remember if the ladies was the right door or the left....I chose was wrong.

Monday, 14 July 2014

My Face is Burning and Noises Hurt My Ears

Hi All,

It's time for the weekly instalment from lupus land....I think lupus land is going to be my favourite phrase this week. Here we go right into another flare up! I am pretty sure that this time it is the lupus flaring up and not the scleroderma,but who knows. Whatever it is I have woken up to a familiar burning pain in my face that can mean only one thing.....the butterfly rash is back. Firstly and off topic...why would you name an awfully painful rash after a beautiful butterfly...yes I know it's the shape of it...but still it is a bit mean on the poor butterflies. Here is the only photo I shall be taking of my face like this....I hate it but it's important to show the world what it's really like!