Having a chronic illness sucks. It sucks for a lot of reasons – but let me tell you the one REALLY getting to me at the moment….
It sucks because every time your doctors fix something – some other shit breaks (sorry – not a pun).
Last weeks results were great – particularly considering the tough time I had with bowel prep – we are both overjoyed – seriously, we could have never asked for more. HOWEVER (and, yes, it’s a big however) a new set of worries has taken the place of the possibility of the disease being back in my bowel so soon after we took very drastic measures.
Over the last few months I’ve been having difficulty with an old friend of mine – my migraines. The frequency has increased, they have become more severe and their pattern has changed. I’m always one for brushing things off (hello! brushing of serious abdominal problems for 15 years +), I suppose I take a little bit more care when it comes to pattern changes. In my experience, a change in pattern with your body, generally means there is something unusual going on below the surface. So when it came to the change in the way my migraines have been striking me – I finally fulfilled my Dr E’s longtime wish and let them scan my head.
What’s been happening? Well it kinda jumped to front of mind (again not a pun, sorry), when were in New Zealand this year. On Thursday the 28th of August I suffered one of my worst migraines to date… It resulted in me seeing auras, burred vision, sensitivity to light and noise and vomiting for 10+ hours straight. After taking more anti-nausier pills than I cared to keep count of as well as EVERY painkiller I had at my disposal…. nothing helped to ease the headache. In the end it was not something that I did that made it stop – it just subsided itself and I fell asleep after losing a day of my life. My very concerned travel companions almost had me admitted to Queenstown Hospital who probably would have run screaming in the opposite direction when we relayed my underlying chronic condition. Thankfully I talked them out of the admission, I got over it at the price of a day of my life – more importantly a day snowboarding. In true irresponsible fashion, I dragged my fatigued body out of bed the next day, beat off another bout of nausea and went riding. I was a bright sunny day, conditions were great and I was on my favourite mountain in the world – don’t judge me. While the vomiting and other side symptoms were bad – probably the most concerning part of that migraine was that I woke up with it – mine have historically built over the day.
Fast forward to last Wednesday…once again I woke up with a migraine – out of character…. and have to take another day off work (after the 3 days for my scope the week before). As much as it shouldn’t – it got every tongue at FTJ wagging about me “always being sick” and “being too sick to hold down a job”… A very hard fact for people to grasp though is of the days I’ve had off “sick” this year – only 1 of them is because I’ve actually been sick. They others have been for invasive, nasty tests and meetings with a slew of doctors and surgeons to admire the work they did last year (well, sometimes that’s what it feels like). Every other day I’ve been feeling off – I’ve forced myself up and into work (a hard task considering how much I’m clashing with it at the moment)… All that bullshit over me being sick for one day…. really? Anyhow, yeah, migraine means no work. I was onto this one a lot quicker than the last… so I had my cocktail of painkillers and anti-nausier pills down the hatch before 7:30am… again though, the pain didn’t subside – not even slightly. After nothing worked – I took the hospital size, migraine dose of Aspirin (2000mg) and got back to sleep for a while. I woke about 3 hours later and the migraine was still there… This is when a normal person would get admitted to hospital (funnily enough the advice of both my clinical nurse and the ED nurse also).. but I am no ordinary idiot – no sir. Instead I took another hospital sized dose of Aspirin, more anti-nasuia pills and went back to sleep again. Why did I fight the admission? Ok so – as a chronically ill person – even a stable one, you don’t get out of an admission for less than 3 days. The ED doctors are good at what they do, but they need to be good at everything…. so when they stick your UR number in the computer and the big flashing “Crohn’s” comes on the screen – they kinda don’t know what to do with you from there and end up calling the bowel team (even though the problem is somewhere else)… So, rather than waste 3 days of my life and end up with a more problematic work situation than I already had – I took enough Aspirin to punch a hole in a normal persons bowel…
It all ended up ok. The migraine eventually subsided after about 16 hours and I turned up for work the next day… feeling like a train wreck but with no hole in my bowel. What was happening did concerned me (even though I did act in a bit of a callous manner)… I’m still taking a cancerogenic drug – my chances of developing a cancer of some description are much higher than a person off the street. And I’ve had a pattern change (think skin – changes usually mean somethings going on there)… so I resigned myself to the fact it needed to be investigated.
It’s been a few years since I’ve had a CT scan – Blood, Fecal Calprotectin and MRI seem to be the weapons of choice right now – in my case anyway. So I was pretty surprised when I walked into a mass production facility… literally I was in and out in 3 minutes, no canular, no dies…. This is pretty much how the appointment went:
Him: “Hi, are you pregnant”
Him: “great, take your hair out, lay still”
Him: “thanks, make an appointment with your doctor”
Me: “do I need to do that urgently” (as in do you see something)
Him: “all I’m trained to do is push those buttons there – I have no idea if what I’m looking at is even a brain”
Do I think somethings really wrong in there? I honestly have no idea… I have thought things are a lot less serious than they really are on a few occasions. The things counting for me are that Mercaptopurine is more a skin/cervical cancer kinda partner and Crohn’s lends itself more to bowel cancer (but very very slight increase of chance there. Plus I’ve only been on the drugs for 4 years – it’s usually double that amount of time before cancers starts becoming a thing… If there is something there – the timing would be perfect… I might as well just set up a suite at the hospital over Christmas every year… hah. I would like to have one lot of holidays out of the clink.