What a fantastic week – no really, can we do it again I enjoyed it so much?
Tuesday night, I get home from bowling rather badly to find my partner washing up – it was my turn. He hits me with it just as I walk through the door. “If I don’t have another job in 4 weeks I am going to quit”. ‘No, I didn’t bowl well tonight – too much on my mind… tired… sick, but hey tell me about your problems’, I thought as I put my tattered hand bag on the dinning room table without looking at him. I know his patients is frayed, so is mine. Working my two jobs and averaging about 4 hours sleep and waking up in the morning feeling like I have been hit by a mac track kinda does that to you. We can’t escape the fact though – that any decisions we make regarding our future have consequences – big ones. We are not on the poverty line – but we are not well off either. Lately out one night out a week has given way to an additional night of tuna casserole a week so we can meet our ever increasing pile of bills. We are trying to save to go away in August… we have the flights and half the accommodation paid for. How did I do it? I worked the entire Christmas holidays and every weekend since – thats how I did it. Good, old fashioned elbow grease. If he were to quit his job – we would be out of money in 6 weeks and we certainly wouldn’t be going on the holiday I have busted my arse paying for and arranging. I hoped it was the result of a bad day, but his mood continued for the rest of the week.
Thursday was my medication review – you know, the one after I had been almost constantly unwell for 6 weeks. My stomach churned in the waiting room – but it was too hard to tell if it was just the uneasiness of the wait or my disease reminding me that I was never going to escape it. The review went poorly – but its what I expected. I am going back on the steroids for another 3 months. My iron is (and I quote) the lowest my doctor has seen in a living person – so low he believes that the test was done incorrectly and he ordered another through the hospital immediately, I should have the results on Monday, I don’t expect them to be different from the QML one – I am literally sleep walking. All this means an uneasy 3 months and an Iron Infusion/Transfusion. Goody. Did I mention I am not good with needles? My prognosis isn’t as good as it was in November. Back then he was taking surgery back on the table, now we are going to talk about it seriously in April. He said it might solve some of my problems – but lets be honest, you can’t cure Crohn’s, so its a temporary fix at best. I think, at this rate, with the amount of pain and discomfort I am in daily (forget about the agony I am in during a flare up) I would volunteer if I thought it would make the damnedest bit of difference long term. It wont. In 12 months the disease will be back… and they believe that in less than 10 years I will be back on the table for my second resection. There is no controlling it and there is no curing it. Researchers need to work harder – because that is not an answer and its certainly not a prognosis. Its a life sentence.
My boss said to me on Friday “whats going on with you, you can’t focus, your airy fairy”. Well… my partners going to quit his job, we will lose $2k in holiday half booked, we will also lose the house 6 weeks after he quits, I am getting 4 hours sleep a night, I am working like a dog here and at home for less than I am worth, I feel like I have been run over by a train and backed over by a mini bus, I have no iron in my body, I do have an incurable disease crawling around in my bowel and last night I woke myself up screaming and seeing spiders crawling all over me and our bed (night terrors caused by my iron levels and medication). I skipped my long story and tried to explain how I was feeling – I know he feels sorry for me…. I know he does, but thats not what I need. I need to just get on with it. I need reminders occasionally to keep me on track and I need to just work. Anyway.
In positive news, Entocort is one step closer to being accepted on the PBS – the politicians are talking about it and it should go through parlement this term. This means – no more prednisone for f mild to moderate cases of Cronh’s and Colitis. This will change peoples lives and hopefully I will be hearing fewer horror stories resulting from years of continual prednisone use.
I also left a comment on a triple j post on Facebook (an Australian Government funded radio show aimed at youth) regarding being divorced young and they have been trying to get in contact with me over that – so I have slipped in there that I am a Crohn’s sufferer and that a story on people who look fairly normal on the outside but suffer everyday might be in order. I am hoping they look into it – this disease and its people need all the publicity they can get. The more people know our plite the more understanding we will be met with rather than the contempt we get now.
I will not just sit back and take everything that comes with this disease. The financial hardship, the mental and emotional toll and the physical pain. I won’t just sit here quietly and take it.
These diseases are a reality. They are here to stay unless more time, money and effort is put into treating the condition AND the people with it. We all have a voice and I will be damned if mine is silenced because it makes other people feel uncomfortable.