The Good

My website is almost finished and its been done out of generosity by an individual… complete and utter generosity.  It has blown me away and I don’t think that I will ever be able to thank this person adequately.  Its starting to feel real – a bit too real.

The Crohn’s/Colitis meeting I thought might not go ahead is booked in for Wednesday – and I am nervous.  Can I make a difference?  I am only one person and what I am asking for is big…. I am asking for drug subsidies and a new treatment trial.  I was really disappointed to see nicotine patches were accepted under PBS while vital and life changing drugs like Entocort remain priced out of reach of many Crohns and Colitis sufferers.  It shouldn’t be a case of “knowing the tricks” to be able to afford the best medication.  Back when it was set up – the MediCare system wad created to provide quality health care to ordinary and disadvantaged Australians – we shouldn’t have to be “in the know” to have access to this.

And, I had a win.  Not a big win, not the win I wanted, but… Holden Australia finally decided to cough up some of the money I am owed for repairs to my recently out of warranty car.  You see, about a month (to the day) after my car was out of warranty, I had two fairly annoying things go wrong, which they decided was my problem – even though I have an extended warranty.  I have since embarked on a campaign of harassment and received some of the money back.  I am not done though – I will get it all back, if marketers are good at anything they are good at manipulation and harassment.

The Bad

My health continues to be poor.  I never really recovered from my last flare up and I believe that I will need to go back up to 125mg of Imuran and back on the steriods to properly get over it and go back in to remission.  Its getting harder waking up every day feeling like a train has hit you and having to run out of meets (sometimes more than once) because of your disease.  And… its embarrassing.  Sometimes I wish I could wear a big badge that says “Yes, I have Crohns – wiki it”.

Stockers job seeking continues to turn up nothing.  The longer things drag out, the more guilty I feel for turning down the job I was offered.  I have to keep reminding myself that there was no guarantee we would have got him back here, even if we were on more money.  And we were trading his absence for mine… it was kind of defeating the purpose.

Ipswitch Bowl was damaged badly during the Queensland Floods (Jan 2011).  The Association Challenge was therefore moved to Rockhampton.  Stoccker and I both agreed we would not be going to Rockhampton when it came time.  We are also experiencing a chronic annual leave shortage and had both of our requests knocked back.  Am I disappointed?  Yes, beyond words.  The closer we got the more amped I was getting.  Its the only tournament that ever really got my rocks off.. its loud, exciting…. its indescribable… you really have to be there and experience it to know what I mean.  Anyway… I had the task of going to the team BBQ today to tell them that I needed to withdraw.  The organizer was right when he said “with your poor health of late and the travel… its probably the best year you could withdraw, if there ever was a good one”.  And he is right.  In the back of my mind, after an 8 hour drive to Rockhampton, I get the distinct feeling that I will be letting my team and myself down.  Still doesn’t upset me any less.

The fucking ugly

Mainly – thats me.  The biggest organ in my body is infected – my skin… again.  I look like elephant woman.  I am at my wits end when it comes to these skin lesions and how the seem to continuously get infected.  I just don’t know what to do anymore, I have tried I would say just about everything to no end.  I have a wedding in a little over a moth and a hens night in two weeks, and its with a lot of people I used to go to school with.  I am generally not a vein person BUT, I would very much like to not look like a train has hit me around those people… I would like to look like nothing is wrong… I am not sure that goal is achievable at the moment.

Slips of the tongue?  I am having this thing at the moment – when I think of something to say and the opposite comes out like “thats awesome useless stuff” instead of thats awesome useful stuff.  Its been happening a lot lately, like at least once a week, at the most inappropriate time possible.  Its only been happening since around the 3 month mark on the Imuran – I can’t help thinking that the medication is messing with the wiring in my brain.  I have written it down in my diary (and yeah I have to write things down lately), to ask my GI – but the reality is, even if it is the medication, what can they do?  They keep telling me that anything that the Imuran does to me is a lot better than what active Crohns Disease would do…

I don’t know how to balance my work/home life anymore… I am working harder and harder – and don’t get me wrong, I know what the goal is… but I have to ask myself is it worth it?  I am ambitious, I am pretty sure I mentioned that before.. anyway, a home run business seemed like the perfect solution to my Crohns/Ambition problems.  In trying to make that a reality I seem to have lost the little work/life balance I had.  I am now working at least 18 hours a day and some nights only getting 5 hours sleep before I do it all over again.  I love what I do half the time, but its wearing me out.   Its not just the two jobs I have to contend with, its running a household and dealing with an illness that doesn’t seem to want to cut me a break at the moment.  Maybe I am crazy?  But I have to keep reminding myself that this is so I can build a better life for myself and Stocker…  Its hard… but I don’t know of any good things that weren’t born through pain.

And that about brings you up to date here in Crohn’s Land – looking forward to pancakes and dog beach tomorrow – a break in the routine and at least half a day off.