“Don’t ask the price I paid… I must live with my quiet rage.”

I think that’s whats getting to me. The price I paid – for only a few weeks of remission…

I’ve known I’ve been in relapse for a few weeks now.  It started with that intense exhaustion that can’t be explained away by “a few bad nights sleep”.  Then the strangest feeling – almost like I can feel the disease crawling around in my insides.

I’ve never been particularly graphic about my disease – but I suppose that’s the point of this blog so if you don’t want to read about bodily functions – navigate away now.

For the last 4 weeks – I’ve been about to go to the bathroom 4 times… Yes – that’s pretty bad.  To be able to make that one visit a week I’ve had to eat the spiciest food I can get my hands on followed by so many double shot coffees I loose count…. You NEED to go, you know that, so you make it happen. Problem is the relief is outweighed by the awesome pain during the week its not happening and on the day it eventually does.  No one really knows the full extent of what happens – except perhaps the Husband.  He pretty much lives it too.

Jump back to last Wednesday… it was 5 days since I’d been able to go – so I took drastic action… two of the HOTTEST (chilli) Cuban Pork Wraps I could get, prior to bowling.  The pain intensified – but nothing. Thursday morning… 4 double shot coffees… still nothing.  Last night – more chilli… more pain… still nothing… This morning it was one week to the day.  I awoke at 3am with pain so bad it felt like someone was stabbing me.  I sat in the bathroom for 3 hours before something happened… all that time the pain getting worse.  At about 6 – the flood gates opened.  Most people would expect me to write about the relief… Relief doesn’t come – well not in my experience.  The unpleasantness continued for an hour and a half… when I got a break I hurriedly got ready for work and sped down the street – the whole time my Husband shaking his head.  I think his exact words were “why would you go to work after the night you’ve just had to be abused by the people you work with”, it’s a good question but one for a later date.  The short answer, and the one I gave him on the way out the door is: “because we have a mortgage to pay and I have obligations that don’t go away because my disease is back”.  I think I learned very early in life the only person that’s going to look out for me… is me.  I had to stop twice on the way to work in public toilets – almost causing a traffic accident the second time… I crawled through the door at work bitterly embarrassed, in a decent amount of pain, but 2 minutes early, which is all that matters to them.

So this is it – surgery, but after New Zealand.  I don’t make it through the year unless I get a break – so that’s the trade off.  Drug me up so I can go on holidays – then do whatever you want to me.  I’m ready for the next few months and how hard they’re going to be – well – I don’t have any other choice, do I?

I called my parents last night.  I hadn’t been in cotact for a week and a half.  My father let his anger ooze over the phone line.  He was angry at me for not coming over and seeing them more… I’ve been working two jobs and almost crippled with the effects of my returning disease – but all that matters to him is that his own needs are met.  Neither of them understand what’s happening to me – they still treat it like the flu – like I’ll get over it.  I so desperatly want supporting parents who care about my insides turning themselves inside out… but all they could muster was a rant about their car registration (for which they get a pensioner discount)…. my Husband bring in ok incomes – certainly not what I would class as “good”.  We’ve parted with $15,000 from January till now… our mortgage payments don’t stop because we’re doing it tough and I’m so sick right now I shouldn’t be working one job let alone two.  I just want my family to give a shit… I’m not asking for anything apart from a bit of caring and god forbid some empathy.  Again it comes back to – the only one who’s going to help me and Stocker is: me and Stocker.  We’ve been let down so much now that we’ve stopped asking for help to avoid getting our hopes up and being let down, again.   Well I have.  I think there is still some positivity left in him – I’m a bit envious of it to be honest.

Thursday was the dentist – I got to use my private health care for the first time.  Scale, clean and filling for $100 – not bad.  Then Stocker comes out of his consult, green.  They didn’t do anything to him so I wonder why – until he opened his mouth.  His jaw has been misaligned since, forever.  We now need to correct it… correcting it is going to cost us… are you ready for this?  Make sure you’re sitting down.  Twelve and a half thousand dollars… No, that’s not a mistake.  That’s $12,500. It will be over 2 years thankfully, but regardless of the time frame its a lot of money.  I just grunted – immune to the shock now after so many financial jolts in the last 6 months.

I am very lucky to have him though – I know he would indeed go to hell in my place if he thought it would help.  I know how lucky I am here – I know I have him in my corner.  I know he would fight for me – not necessary yet, I still have enough fight to go around.

I have been contemplating others with my disease have told me, that it happens to people who can handle it.  People who are born to get up and fight for every single inch… and I suppose that is true.  I will have the occasional cry and breakdown, but I will fight for every single step I make… I will fight until I physically cant fight anymore.  Not because I enjoy it or because I am necessarily strong, because that’s how I’m built and it’s just who I am.  Ross said he thinks I’m strong… I don’t see it, I’m just “me”.  I’d call her “stubborn” rather than anything else.

So here I am – relapse.  The pain is so familiar but for the time being feels worse than before even though I know its not… I guess its because I had a break from it.  Part of me is angry at myself for not having the surgery last year… but then I couldn’t have known what the Prednisone was going to do to me… and what life was going to throw at me.  I’m still trying to look forward to them cutting it out…. to being off the medication for a few months… to rediscovering the part of me that had to “go away” to cope with all of it.  There is that voice in my head though… the one telling me that if my Prednisone remission was so short lived I’m expecting too much in thinking I’ll get more than a year out of surgery.

I’m lost in my own thoughts of what might be.

No. I’m just lost.