(no subject)
I've not been writing for two reasons that are both contradictory and a pretty good illustration of my general state of mind lately: partly it's for lack of wanting to talk about this, for knowing that it's real and I quite simply don't want to think about it, and partly because one side of me thinks this is all some joke or nightmare or misunderstanding and if I wail and gnash teeth it's like my griping is going to be some great insult to REAL arthritic people when they finally tell me that, oh, close call, I'm not one after all.
Buuuut, today my hands grew nodules.
"Ohh, rheumatoid arthritis is a terrible disease," my GP said to me, "You don't want it, trust me," until I started looking like I actually fit the bill, and then everyone went, "Oh, there's wonderful drugs we have for that these days, it'll all be fine, we'll even have you back playing the piano again soon!"
Fucking bollocks.
They go at this with a two-pronged approach, trying to deal with the pain on the one hand (anti-inflammatories) whilst on the other putting me on a lifetime dose of anti-malaria drugs that just coincidentally were found to have a slowing-down effect on the disease ("disease-modifying drugs"). Well, there's been no end to the pain, which writhes around my neck and upper and lower back and shoulders and creaking knees as it sees fit but has taken up residence very permanently in my hands (which smart and burn and screech and pop big blue veins out 24/7) and my feet (on which I can't walk more than a couple of hundred metres a day), and now apparently there's no start to the disease-modifying drugs because my hands have all sprouted the beginnings of what looks like extra knuckles growing between my second and third joints, on all extensors but my forefingers and thumbs.
The rheumatologist has moved my appointment up two weeks to Wednesday (this is that bad). Of course, whilst apparently respected in the field, I'll be surprised if he can do anything other than peek at my new proto-deformities with interest because they just don't know anything about this shitty fucking disease: what causes it, what fixes it or why... I've been hanging on a few articles I've seen lately about people developing "cures" of various kinds, thinking, "Ok, I just have to make it through 5-10 years until they've made it through the trials" but honestly? When pharmaceuticals are the big money-making game that they are? Who really thinks it's likely they're going to develop anything anyway? but even if they do, apparently I'll be long fucked before it happens. They said "If it's RA, your prospects are good cuz we've caught it early." Like sweet fuck or my fingers wouldn't already be irreparably bulging.
So that's my current existence. Drugs that variously promise a future of stomach ulcers, hair falling out and going blind, whilst not even stopping the hell of the present. Yippikayay.
Before all this happened I was about as happy as I've ever been, and just growing aware of it, and nodding and grateful and thinking "Here my life begins!" and "Lo, the things I'm going to do!" and now I'm pondering whether I could get away with breaking into a pharmacy to steal a big enough overdose of something nasty, or whether snaking a tube from the exhaust pipe into the window of a car would be the optimal way to go given that it's all downhill from here and here fucking sucks. Isn't it ironic? Yah I rilly do think.
So, do excuse me if I go silent for a while, but there's nothing here you want to hear about, trust me, it's all the fucking pits and I'm barely stumbling (jeez, literally, too) through at this point in the game.
No comments, please, because the obvious thing is to send wishes that I'll feel better, but that's not something that happens with this disease, it's just a matter of staving off the inevitable worse as much as you can - and if today's anything to go by, my doctors can't.
Buuuut, today my hands grew nodules.
"Ohh, rheumatoid arthritis is a terrible disease," my GP said to me, "You don't want it, trust me," until I started looking like I actually fit the bill, and then everyone went, "Oh, there's wonderful drugs we have for that these days, it'll all be fine, we'll even have you back playing the piano again soon!"
Fucking bollocks.
They go at this with a two-pronged approach, trying to deal with the pain on the one hand (anti-inflammatories) whilst on the other putting me on a lifetime dose of anti-malaria drugs that just coincidentally were found to have a slowing-down effect on the disease ("disease-modifying drugs"). Well, there's been no end to the pain, which writhes around my neck and upper and lower back and shoulders and creaking knees as it sees fit but has taken up residence very permanently in my hands (which smart and burn and screech and pop big blue veins out 24/7) and my feet (on which I can't walk more than a couple of hundred metres a day), and now apparently there's no start to the disease-modifying drugs because my hands have all sprouted the beginnings of what looks like extra knuckles growing between my second and third joints, on all extensors but my forefingers and thumbs.
The rheumatologist has moved my appointment up two weeks to Wednesday (this is that bad). Of course, whilst apparently respected in the field, I'll be surprised if he can do anything other than peek at my new proto-deformities with interest because they just don't know anything about this shitty fucking disease: what causes it, what fixes it or why... I've been hanging on a few articles I've seen lately about people developing "cures" of various kinds, thinking, "Ok, I just have to make it through 5-10 years until they've made it through the trials" but honestly? When pharmaceuticals are the big money-making game that they are? Who really thinks it's likely they're going to develop anything anyway? but even if they do, apparently I'll be long fucked before it happens. They said "If it's RA, your prospects are good cuz we've caught it early." Like sweet fuck or my fingers wouldn't already be irreparably bulging.
So that's my current existence. Drugs that variously promise a future of stomach ulcers, hair falling out and going blind, whilst not even stopping the hell of the present. Yippikayay.
Before all this happened I was about as happy as I've ever been, and just growing aware of it, and nodding and grateful and thinking "Here my life begins!" and "Lo, the things I'm going to do!" and now I'm pondering whether I could get away with breaking into a pharmacy to steal a big enough overdose of something nasty, or whether snaking a tube from the exhaust pipe into the window of a car would be the optimal way to go given that it's all downhill from here and here fucking sucks. Isn't it ironic? Yah I rilly do think.
So, do excuse me if I go silent for a while, but there's nothing here you want to hear about, trust me, it's all the fucking pits and I'm barely stumbling (jeez, literally, too) through at this point in the game.
No comments, please, because the obvious thing is to send wishes that I'll feel better, but that's not something that happens with this disease, it's just a matter of staving off the inevitable worse as much as you can - and if today's anything to go by, my doctors can't.