A little history..... Part 1

I apologise in advance to all those reading this that have heard the events time and time again or were unfortunate to see it all first hand, but i thought it important to fill in the gaps for those that are completely new to my story and how things came to be.
I was diagnosed in December 2009 with MCTD (mixed connective tissue disease) and borderline Lupus (SLE).  The previous 6 months to a year before hand had been the turning point for me starting to realise that something in my body just wasn't working right, but in hindsight i can track back odd little symptoms way back to 2006.  Unexplained aches and pains, sore patches of skin that would appear and disappear that i thought was psoriasis, stomach problems that i thought was a touch of IBS, and most significantly joint pain and problems.  Gradually the issues with my joints got worse, there'd be times when i couldn't bend my fingers or wrist or straighten my arm without red hot pain shooting through it and Mark (my now lovely husband - hello darling !) would have to dress me... this was 2007.
Doctors poo poo'd me off with pain killers and anti inflammatories saying i may have a touch of arthritis.  I carried on regardless and the symptoms gradually increased, more pain killers and more shrugging shoulders at the GP surgery.
As 2009 dawned so did the awful fatigue, a feeling beyond tired it's like a black cloak that knocks you over, your hands and legs shake, you feel sick and there's nothing you can do but go to bed and hope it goes away.  Then the fever and chills kicked in, again it would put me in bed shivering like i had the flu yet sweating unbelievable.. in the morning i'd sometimes feel better, refreshed but the rash had started to leave its mark, blotchy little butterfly kisses dotting my neckline after the fevers.
The final straw came in late November that year, after the rash had become hugely more apparent, spread across my neck and down my arms, and a near collapse at work I picked up the phone and requested an emergency appointment that day.   By a strange coincidence the only emergency appointment left was with a GP whom i later found out had a history working in Rheumatology before going into general practice.  She was sympathetic and astute to the symptoms i was experiencing and demanded a full run of blood tests.  3 weeks later i was sat in the same room again on my lunch break expecting her to tell me i had hormone problems or a thyroid issue.  When she mentioned the word Lupus i had absolutely no idea the seriousness of what she meant, "right ok" i said. She printed a lot of information off looked at me with sad eyes and told me i was being referred to the hospital for more tests.  I returned to work and went about my business, i made the calls to Mark, Mum and Dad and carried on... Now i wish i could go back and scream at 2009 claire and say "DO YOU KNOW HOW SERIOUS THIS IS!" but in truth i didn't really mind, i'd heard of it and knew the basics but didn't quite really understand.  Everyone else seemed to be more worried than me and to this day I honestly cannot explain my complacency, i wasn't in denial and i wasn't trying to be brave i just.. was.
After visits to rheumatology i was fired up with a cortisone injection to help my joints and given a prescription for hydroxychloroquine, the basic bread and butter of MCTD/lupus medications and things seemed relatively stable for over a year.
Late January 2011 and 5 months before my wedding i started to feel very sick, puffy face, eyes, a cough that would not shift and despite being on a new years / pre wedding countdown diet i had somehow put on 7lbs.
NEXT Just a blur:
Alarms bells, doctors, urine test, a flapping GP, something about kidneys, a phone call to the hospital, packed off in a taxi to the hospital, more blood tests, a long wait, lots of serious faces, more stuff about kidney problems, kidneys not working properly, lupus antibodies are a perhaps attacking, must have kidney biopsy to confirm, one weeks wait, legs and stomach start to swell with fluid, start being sick, go for biopsy, can't have biopsy blood pressure is soaring, medication for a week to bring it down come back next week for biopsy, strapped to a table, big clamp on my back, kidney biopsy taken, lying flat still for 6 hours, kidney biopsy comes back, brand new doctor comes in with serious face, think i was on my own? can't remember, kidneys are failing, we're keeping you in to stabilise you, you've got to have 6 months of a chemo based therapy or you're going to be in big trouble.................. pause.

gaining perspective

You would think I would know by now that you can't plan a thing or take things for granted when you have Lupus.  I've been working full time for over four months now (Yay go me...!) and have had every single cold going thanks to my daily interactions with the general publics offspring, whom are indeed very beautiful,  but are at the same time toddling germ disseminators (no offence intended) that play havoc with my compromised immune system! A form of self torture perhaps or just an occupational hazard?

Anyway i'm rambling back to the point i started with: worked hard, been ill ridiculous amount of times, not had a day off (hero complex), worked crimbo = looking forward to a week off to see my nephews and have a few days to myself, do jobs i'm too tired to do when working and generally recharge. Lovely yes?  * family fortunes style buzzer noise* 

After spending three lovely days with my nephews I am rewarded with so four days of chronic nausea and lethargy and not want to touch and ounce of food, at which point left me with precisely 1 day to hopefully recover and get my strength back before i had to go back to work on Sunday. Holiday over for me.   Then by the grace of god another miracle happened! Woke up monday with my fifth cold and bad chest since the beginning of December.  Now i don't know about you but i think that is a personal best! an average of 0.4 illness per week or 2.4 per month (yes I did the maths), i certainly hit the jackpot with this one.
You see the thing about Lupus is when he comes to the party, he usually brings a few of his mates along too, and i'm not just talking about colds, flu and stomach bugs - they're just gatecrashers that turn up occasionally, annoying but easily distracted by the next party and  soon move on -  Unfortunately there's some big boys that turn up, make a real mess and you need to get the professionals in to help clear out.
 I know the best of us have to deal with being struck down at the most inconvenient of times, who hasn't been ill as soon as we finish work for christmas - but when you've had to rearrange and change your whole lifestyle already and it continues to happen with unfair regularity you can't help but feel that someone is starting to have a laugh at your expense.    Its these times that yet again I have to really dig deep to gain perspective on the whole situation, to realise that things have been far worse.  But i'll be the first to admit it's hard, when there's something new to deal with my health nearly every week it's easily to slip into mindset of believing there's somebody up there having a big laugh.  Thankfully i have a wonderful husband that keeps me very grounded and friends that do remind me quite often they 'do actually give a shit'.
I probably sound like a broken record by now but its very true that there is always someone worse off out there or hurting more.   People proportion blame for things that are wrong in their lives far too broadly and with misplaced fact - what a difference it would make if they actually cherished the smaller things and valued what they had in front of them.  Perhaps then if there really was blame for something they could pinpoint the problem directly, you can't blame a whole hospital for the failings of one doctor. If i was angry and tried to blame someone or something for all that happened to me and how its taken my life right off track, i'd have no friends, no job and nothing worth trying to hold onto.
One of my major frustrations is peoples lack of perspective, even with the smaller things, why get angry   at the bus being late when you know your friend is ill? why get angry about what the bitch at work has said when you get to go home to a warm house and loving husband?  worry about your health, your family's safety and how your friends are, not whether you can afford a holiday this year.
Can you get this type of perspective without experiencing anything awful or traumatic or character building in your life?  I honestly don't know, i think there are those who have in incredibly open mind and can easily see without a glimpse or reminder and i think there's those who can by seeing it through the eyes of someone else, inspiration making them see the light of day.