The last month has been busy, very busy, so finding time to write, not always the easiest task.  Hopefully I will be able to fill in some gaps.

Thursday the 10^th of June – Medication review

I get the feeling the specialists are trying to a) work more money out of me and b) try to get me fired due to the immense amount of time I am having to take off to “talk” about my condition.  While in some ways its been good and I have been able to get more information on Crohns disease, I kinda wish they would just…. do something.

I did get some handy information about Crohns at my review, probably the most important is that’s its quite rare – 1 in 10,000 people have Crohns Disease, and only 1 in 5 of those will show symptoms.  I also found out that I was genetically predisposed to the condition due to the cell spacing in my bowel.  There are new and dangerous treatments out, they are referred to as Biological Treatments. The two names I got were Humira and Remicade – reading about them scared me more than anything.  Basically, the new treatments are very risky.  We spoke a bit about me too – I was attack free for 7 weeks and starting to hope that the medication was working.  The specialist gave me some hope that the stricture in my bowel may not have been permanent, it may not be solid scar tissue.  This would avoid costly surgery with long recovery times and no real benefit.  As I have said be fore, cutting pieces out doesn’t cure the disease, it just pops up somewhere else.  I  was pretty happy coming out of the consultation – but that wasn’t to last.

Friday the 11^th of June – Leave for Kingaroy

Bowling in Kingaroy

The next day we were meant to leave for Kingaroy – the location for the 2010 Association Challenge, and Ten Pin Bowling event in Queensland.  It is my favourite, and the only one I have continued to bowl.  The night before it was Stockers mothers birthday and we had Chinese.  At about 3am Friday morning a Crohns attack had started to settle in and my worst fears were realised.  We would not be able to leave on time, and I may miss the entire tournament.  It was the same as it always is, lots of pain, throw up… sleep, wake up feeling like a train had hit me.  I got up at about 3:30pm and told my partner to get ready – we were leaving.  He cautioned me about going so soon after the main part of the attack.  I didn’t listen, I had in my head I was letting my team down so I packed, having to sit down every 5 minutes, got in the car and we left.

It was a particularly hard trip and I tried not to show how bad I was – but Stocker knew.  We got in at about 10pm and I was feeling worse rather than better.  We were set to bowl at 5am the next morning – but I never made it.  I was up all night.  The attack reset and I was back to square one.  I went through the whole thing again… I finally dragged myself out of bed at 2pm and got dressed and went in.  I felt disgusting, and judging by the looks I got, my appearance wasn’t that of a healthy person.  But I was there, and I would have been happy to just be there, wearing my shirt for the rest of my tournament.  Surprisingly though, I was bowled that evening and I survived it – but only just.  From that point on, I bowled every game – and it wasn’t that bad considering my condition.

I have to give a big shout out to my team captain Kellie Hart.  I have always had a high opinion of her as a captain and a bowler, but the patients, reassurance and support I got from her was inspiring.  As I have said in the past, if she ever wants me to bowl in her teams – all she has to do is ask and I will move heaven and earth to be there.  It wasn’t just Kellie though – it was all of the experienced Challenge bowlers in our team and some in the other teams.  I was on such a high for the rest of the weekend because of the people.  That’s why I bowl that tournament.  For a few precious days, even after the attack, I felt like a bowler rather than someone who has Crohns Disease.  Those times come few and far between so I relish every single one I get now days.  Even with our present economic circumstances I am inclined to try my damnedest to get to Ipswich next year – just so I can have that feeling again, even if its only for a few days.

Thursday the 24^th of June – Performance Evaluation

I have written something already about this ordeal.  Well it wasn’t really an ordeal, it was what I expected, but it has done damage to me.  As you all know I didn’t get anything, no money, no promotion, no bonus… zip.  Things aren’t good in the industry especially in Queensland, but given our circumstances, I hoped.  To add insult to injury, I was told I “don’t look professional enough”, I do wear the uniform, but I guess I don’t look like a corporate high flyer… then again… I am only a Product Manager and I sell tools – shouldn’t looking neat be enough?  Marketing Manager – sure I can understand… but I am not there in the eyes of the company in question, and I fear that I will never get there – as they move the goal posts every time I get close.  I am not sure what it is… but I have this feeling that if I was a bloke – perhaps it wouldn’t be this hard.  Maybe I am just off side at the moment.  Anyway – yes – not professional enough.  At this point I tried to explain some of the side effects my medication has, the three most notable: seesawing weight, bad skin rashes and the extraordinarily high cost.  I wasn’t able to finish… I was told that “of course I can afford a new item of clothing every few weeks”, they obviously don’t realise how hard most people are doing it right now… cause I would be lucky if I could afford any new item of clothing this year – let alone work clothes.  These comments put my self esteem in the toilet.  I have never hated myself as much as I did Thursday night and Friday.  I managed to pick up a bit on Saturday – puppy school has that effect on me, I have no idea why.

I do think that workplaces, not just mine, should listen to staff when they try to explain their financial position.  Its not okay to dismiss it just because you are doing okay… shit, I’d be doing more than okay with a six figure salary, plus car and phone too.  But alas that’s not where we are at… and honestly, if we do have extra money one week – there is no way I would spend it on clothes for myself when its our money and a new business suit is hardly going to do Stocker any good.  Personal circumstances should be considered more carefully before launching into a speech at someone who is less than emotionally comfortable at the time.  If I got paid more – then sure, I’d go out and buy clothes… but right now, we are in no position to be so frivolous.  It wasn’t the comments on my appearance that sparked my latest in a long line of breakdowns, it was finally coming to terms with the knowledge that I am going to have to find a job that pays more.  I love where I work, the people and the work itself, but we cant survive on our incomes with all my new Crohns related expenses.  If I didn’t have Crohns disease, it wouldn’t even be a consideration… we would be getting by just fine and even saving money… have I mentioned lately that I hate this disease – and all its friends.

Out of this I have developed some monster fears.  The first being that Crohns may stop me from traveling.  My attacks are that bad I would have no hope boarding a plane and flying.  Without proper pain management medication, I am in a spot.  We are going to have to wait and see what an impact this has on future travel – at lease with our money situation, its not going to be a real factor for a few years.  Other than that – I am concerned about my ability and that of other ordinary Australians to cope with Crohns disease when the right medications still aren’t subsidised.  I have emailed so many MP’s without an answer – I thought our political system was rooted now I am sure of it.  Why is the right drug so expensive?  Why would they make people suffer by forcing them to take Prednisone?  And most importantly, who do I have to approach to get something done?  I am willing to do just about anything at the moment – including going to the papers, but I can’t say that having everyone know that I am ill is an appealing thought – and it might seriously hamper me getting another, higher paying job, which I desperately need at the moment.  I have a feeling that bridge will have to be crossed and sooner than I would like.  My last concern is that these expensive drugs aren’t working.  The fact I have had another attack since being on them has added fuel to the fire… surgery is back on the cards and long-term steroid use leads to sever Osteoporosis.  Am I doing myself more harm than good?  And if I am, what’s the alternative?

Metaphorically nuking your body with a cocktail of dangerous drugs is all modern medicine has come up with – but surely there has to be a better way.  After all, every doctor swears an oath to “do no harm”, can’t they see that by treating Crohns Disease and Ulcerative Colitis conventionally, that’s precisely what they are doing.