I know most people would probably think I am dead by now, I realise its been a while. I suppose there are a few reasons for that.
Today was my medication review… after the last one, it could have gone either way – but I had a feeling it would be bad.
This week has really been deflating, today has just topped it off.
The morning started well, sitting in bumper to bumper traffic outside Gold Coast Hospital for about 20 minutes. In that time I moved a total of 20-30cm. I am so angry at our state government. I mean, they are building a new, awesome hospital right? Cool! But before its finished (a long while before) they start digging up Southport to put in this ridiculous “light rail”. I say ridiculous because it is only going to operate between Southport and Surfers and its construction will add another 20% onto public transport fees – lucky Stocker isn’t commuting anymore. Anyway, so yeah, they are digging up the road outside our public hospital – the only one on the Gold Coast who has an A&E trauma team…. so it generates a lot of traffic. It is just the worst thought through, pointless and poorly timed project in the history of EVER.
I was late for my outpatients appointment… so he saw the 9:15 before me… delaying the inevitable. I went in and I knew what he was going to say – I even knew what he was going to do. I would love to say it made it all easier. It didn’t.
All my tests came back badly. My metabolites were under control for the first time since I had been taking azathioprine, but my bowel was swollen quite badly and I was starting to feel run down again. They can’t put my dose up… so that leaves us with another in a long list of medication changes. I have been proscribed 75mg daily of Mercaptopurine (6-MP, Purinetho). It’s another cytotoxic immunosuppressant that makes my travel insurance premiums go up… and it means I start all of the fun medication side effects all over again. I was so run down and depressed when I started the Imuran… I really don’t want to go through all that again… but I have no choice. Yes, even though I have kept a lid on it, I am in considerable pain… and my skin looks as if its rotting off my flesh. So I have known for a while what was going to happen… and that is one of the big reasons I haven’t written. Things were looking up and I didn’t want to admit to myself (or anyone else) that I was feeling/looking worse. To counter my badly swollen bowel I have also been put back on the full dose of Entocort (corticosteroid) for the next two months. That in particular is bitter sweet. They make me feel really good, make me forget I am even sick… but I can’t stay on them. It’s almost addictive. When you have been sick for as long as I have, feeling really good for a few months is an addictive experience. After I come off the corticosteroids, I generally have a big reality check and a my mood crashes. I suppose that’s normal though.
I asked Dr E about a test and treatment I read about… he told me it has no relation to Crohn’s (even though the journal said it did) and not to get my hopes on. He basically said there is nothing on the horizon. He also mentioned he didn’t believe it was a disease they would ever cure. I like that he was honest with me, but that kinda crushed my last bit of hope. I suppose its better to be realistic rather than to live in lala land.
I left and slapped my sickening smile back on so I could confront work for the afternoon… After a meeting like that, you kind of sit there listening to whats going on around you and think “how fucking trivial”. I listen to the girls talking about their hair and their nails and their clothes and… I can’t even pretend so I can join in anymore… I just can’t muster a single gram of fuck. I am that way with a lot of things now days… I think to myself sometimes “where has that compassionate person who used to be there for everyone and everything gone”. I realise I killed her about 12 months ago when I started to prioritize and figure out just whats important. But if I get pinged for it, its manslaughter. I wouldn’t have survived the last year if I had of stayed that person. I do wish I could unknow the things I have learned in the last 12 months if its an consolation.
I managed the day, staying (very falsely) chirpy… One things for certain when you have “bigger picture” stuff on your mind. the stupid, childish, high school stuff that goes on at work doesn’t even register. I did stop to pity the people involved when I got home for about 3 minutes. I patted myself on the back for that given my current lack of tolerance to horse shit. Maybe I am not so much of a lost cause.
I am frustrated because there is no end to feeling shit in sight. I don’t feel like this new immunosuppressant is going to be the answer… I am not sure if there even is an answer… (what’s worse after talking to the number of doctors I have spoke to, I am starting to think they haven’t even figured out the question properly yet). I am frustrated that I have to deal with the petty going on at work and my bickering family without even a “but enough about us, how have you been lately”. I have been saying recently that I feel like the only adult in my entire family and that’s starting to weigh heavily on me. I look around at all these other families… how supportive they are of each other and… as pathetic as it sounds… that’s what I wish for. I don’t wish for money or a holiday or anything other to be supported for a while rather than always having to be the support… I realise that indicates a huge lack of imagination – but there it is.
My boss left on his European vacation today… I don’t know how I am going to handle the next 4 working days without him… I have a lot more to relay about the last few months like my incredibly awesome family feud, my wicked tooth extraction, my (lack of) wedding plans and the very difficult anniversary of Marion’s death (which occurred yesterday).
For now though I think I am done boring everyone to tears.