It seems appropriate, given the current Hobbity furore (which I’m something of a part of, I’ll admit – hard not to be when you were a die-hard LotR fan as teen in the early noughties), that my intestinal word association of the morning as I’m lying in bed writhing (even though I popped Tramadol two hours ago) was of a Hobbity nature.
As I moaned to myself ‘take it OUT, don’t want it,’ some constantly fantastical corner of my brain piped up ‘We don’t… neeeeeed you.’ Granted, if it gets to the point where ‘jpouch looks after us now’, then I won’t even have any angry colon-gollum to talk to (and with its grumbles and gurgles, perhaps it is talking back… bitch). ‘Go away’, ‘leave now and never come back’… bro, those are my vocabulary almost every morning.
The pain for the morning is slowly – very slowly – abating, but this is really just cementing the fact that I really want off this stupid trial. I wouldn’t even care if they decided to skip infliximab/Remicade entirely and just took the damn thing out. That being said, I really can’t take an extensive period of time off work until April (working in a uni bookstore means WEIRD periods of business. March and July are the ‘yeah, you want leave? time to resign, buddy’ months, whereas December is, for most people – except for me, since I deal with the orders for several schools which start back in January, huzzah – our quietest month of the year. The possible problem with Remicade is that typically government funding wouldn’t cover a large course of it for me since I only (at last check) have left-sided colitis, even though the left-side in question is super bad. A long course of Remicade would normally require pancolitis. But, given that I have exercised every other possibility, including way too many months on this damn trial, I think the docs are fairly confident that an exception could be made for me – the hospital has additional funding for situations such as this, or something. Things like this give me the tiniest glimpse into the hell that the US healthcare system must inflict on those with an IBD or any serious/chronic disease really. From what I can tell, it looks as though a single infusion of Remicade runs about 6000USD, and even people with insurance seem to be having to pay a thousand dollars or so towards that.
That blows my mind. It won’t cost me anything, in effect. I know that taxes pay for it, but it’s not like having higher taxes on my hardly noteworthy salary makes me incapable of carrying out day to day work. It sickens me to think that a purportedly first world country can have so many people who think it’s acceptable to maintain such an ‘every man for himself’ mindset, to be so anti tax. No government is perfect, and for sure there are things that they do or say that aren’t to my liking – hell, I can’t stand our current PM or his party – but at least we don’t have to worry that getting sick will bankrupt us. If I had one of these ‘deductibles’ or ‘out of pocket payments’ or whatever the hell it is that the terrifying insurance companies make you pay in the States, I don’t know what I’d do. It would make what is already a horrific thing to deal with so much worse. My prescriptions cost me $3 for a three month supply, regardless of what they are. Because Remicade would be administered in a hospital, it wouldn’t cost me anything.
But, like I say, at this point, I’d almost rather they just take my damn colon out. It may have had 18 or so years of reasonably perfect function, but for the last 3/4 years it has just shut down shop. It’s about 2 years since I was officially diagnosed. And despite going through the rigmarole of Pentasa, Colifoam, Asacol, azathioprine, and now several months of trial injections, not to mention an upper endoscopy, two full colonoscopies and five (I think?) flexible sigmoidoscopies, I’m pretty much as bad as I’ve ever been, if not worse.
So, take it. I don’t want it anymore.