Saturday, 24 October 2015
Friday, 16 October 2015
Sucking on Pennies
The humble penny disappeared from Canadian circulation a few years ago. It cost more to make 'coppers' (as my grandmother called them) than the $0.01 they were worth.
So what does this have to do with this blog? I feel like I have a mouthful of them. Blech!
I had an MRI yesterday. Nothing is wrong, this is 'routine monitoring'. Expensive and waste of time and spoons 'routine monitoring'. When I had my last follow up in May, the Registrar said that it was 'good practice' for those on Humira to have 'routine monitoring' of their condition. I pointed out that the best way to monitor a drug that effects the immune system is to monitor the immune system, which we already do with regular blood work. I then went on to explain to him how terribly ill I was after the last one thanks to the contrast dyes, and with how much I had on at work at that point, I wasn't in a position to give up several days to getting over the side effects for what I felt was an unnecessary scan. I'm in remission, so what's really the point here? When I was sick and couldn't keep anything down they weren't exactly in a hurry to get me one (I waited six week for one considered 'urgent'), so why now? The Registrar, who unlike pretty much everyone in that clinic, is willing to hear me out, agreed that we could leave until my next review in February.
Two weeks later, I get a letter through booking me for an MRI the day before I go on holiday. Huh?! That wasn't what we agreed. I later found a letter on the hospital electronic records system (that I never received by post) saying that he had been overruled on that by one of the consultants. A consultant I have never met. Why does someone I have never met have a say over body? Your guess is as good as mine.
So, I cancelled the date I was given, as I wasn't spending a camping trip feeling like crap and told them to put me on the wait list for September, as I didn't have the work capacity (or spoons) to sacrifice to this. The next time I heard from them was in August when they called saying they booked me in the following day as they had a cancellation. 'Um, I'm on the Eurostar and will be in France in an hour,' I said, proceeding to remind them that I said I wasn't available until September.
So in September, I had blood work requisitions from the nurse through the post. Got that done, then had a message from her saying that the blood work was fine, but they really need me to have the MRI. So when I got an appointment through for yesterday, I felt like I couldn't get out of it.
Now, I don't have an issue with MRI's per se. I know some people get claustrophobic in them, but I only feel claustrophobic in crowds, so that's not a problem. I'm not particularly bothered by the noise, and tend to find it quite rhythmic.
It's the bloody contrast dyes that are my problem!
You get two when you have your guts scanned: one you drink and one up your arm. The one you drink doesn't taste overly bad, although it has a funny texture, which I would say is like drinking thick water. But you need to drink a litre of it in an hour. On an empty stomach. Can we say 'trapped wind'? 'You need to drink that faster, dear', the slightly condescending radiographer says to me. 'If I do, I'll end up with trapped wind, and it won't be going anywhere,' I say. She pushed me to drink more quickly. Got me into the scanner, and all they could see was the dye on top of an air bubble. I spend 10 minutes wandering the hall rocking a sexy hospital gown/cannula/slippers combination until I can belch that baby up. Point made.
The drink contains a mannitol solution that coats your guts so they show up on the scan. Any of you chemistry types will right away recognise the '-itol' on the end of it. That means that it is a sugar alcohol derivative. Anyone who has ever experienced the misfortune of 'sorbitol' in their food (ask a diabetic about diabetic chocolate) will see the potential problem for Crohnies here. It also contains metoclopramide, which is marketed as an anti-nauseaent. What it really does is force everything out of your stomach into your guts. Again, can you see the problem here for Crohnie's? A well meaning GP gave me metoclopramide when I was constantly puking my guts up before I was diagnosed. The result was rather like this scene from Aliens -
So the solution to that mess is to give you lots of intravenous Buscopan, an 'anti-spasmodic' to calm your guts down. Problem is, the stuff is pretty useless with me. As they found out. And it blurs your vision at those doses. Joy.
They also inject a contrast dye called Gadolinium through an IV. It is very cold and instantly leaves a metal taste in your mouth, which stays for days. And it gives you a massive headache and makes you feel 'off'. The NHS claim it is perfectly safe and doesn't cause problems for most people. Everyone I've known who's had it feels like crap afterwards for a few days.
And that metal taste stays. And stays. And stays. The only things that seems to get rid of it are salty things. So I've been eating loads of Pringles and Goldfish Crackers and will probably make something with bacon for dinner. Of course, drinking lots of water is meant to flush the Gadolinium out of your system. Salt makes you retain water. Can't win.
Salt makes the taste go for a bit, then it comes back. Like sucking on pennies. Blech!
So what does this have to do with this blog? I feel like I have a mouthful of them. Blech!
I had an MRI yesterday. Nothing is wrong, this is 'routine monitoring'. Expensive and waste of time and spoons 'routine monitoring'. When I had my last follow up in May, the Registrar said that it was 'good practice' for those on Humira to have 'routine monitoring' of their condition. I pointed out that the best way to monitor a drug that effects the immune system is to monitor the immune system, which we already do with regular blood work. I then went on to explain to him how terribly ill I was after the last one thanks to the contrast dyes, and with how much I had on at work at that point, I wasn't in a position to give up several days to getting over the side effects for what I felt was an unnecessary scan. I'm in remission, so what's really the point here? When I was sick and couldn't keep anything down they weren't exactly in a hurry to get me one (I waited six week for one considered 'urgent'), so why now? The Registrar, who unlike pretty much everyone in that clinic, is willing to hear me out, agreed that we could leave until my next review in February.
Two weeks later, I get a letter through booking me for an MRI the day before I go on holiday. Huh?! That wasn't what we agreed. I later found a letter on the hospital electronic records system (that I never received by post) saying that he had been overruled on that by one of the consultants. A consultant I have never met. Why does someone I have never met have a say over body? Your guess is as good as mine.
So, I cancelled the date I was given, as I wasn't spending a camping trip feeling like crap and told them to put me on the wait list for September, as I didn't have the work capacity (or spoons) to sacrifice to this. The next time I heard from them was in August when they called saying they booked me in the following day as they had a cancellation. 'Um, I'm on the Eurostar and will be in France in an hour,' I said, proceeding to remind them that I said I wasn't available until September.
So in September, I had blood work requisitions from the nurse through the post. Got that done, then had a message from her saying that the blood work was fine, but they really need me to have the MRI. So when I got an appointment through for yesterday, I felt like I couldn't get out of it.
Now, I don't have an issue with MRI's per se. I know some people get claustrophobic in them, but I only feel claustrophobic in crowds, so that's not a problem. I'm not particularly bothered by the noise, and tend to find it quite rhythmic.
It's the bloody contrast dyes that are my problem!
You get two when you have your guts scanned: one you drink and one up your arm. The one you drink doesn't taste overly bad, although it has a funny texture, which I would say is like drinking thick water. But you need to drink a litre of it in an hour. On an empty stomach. Can we say 'trapped wind'? 'You need to drink that faster, dear', the slightly condescending radiographer says to me. 'If I do, I'll end up with trapped wind, and it won't be going anywhere,' I say. She pushed me to drink more quickly. Got me into the scanner, and all they could see was the dye on top of an air bubble. I spend 10 minutes wandering the hall rocking a sexy hospital gown/cannula/slippers combination until I can belch that baby up. Point made.
So the solution to that mess is to give you lots of intravenous Buscopan, an 'anti-spasmodic' to calm your guts down. Problem is, the stuff is pretty useless with me. As they found out. And it blurs your vision at those doses. Joy.
They also inject a contrast dye called Gadolinium through an IV. It is very cold and instantly leaves a metal taste in your mouth, which stays for days. And it gives you a massive headache and makes you feel 'off'. The NHS claim it is perfectly safe and doesn't cause problems for most people. Everyone I've known who's had it feels like crap afterwards for a few days.
And that metal taste stays. And stays. And stays. The only things that seems to get rid of it are salty things. So I've been eating loads of Pringles and Goldfish Crackers and will probably make something with bacon for dinner. Of course, drinking lots of water is meant to flush the Gadolinium out of your system. Salt makes you retain water. Can't win.
Salt makes the taste go for a bit, then it comes back. Like sucking on pennies. Blech!
Subscribe to:
Posts (Atom)