Don't wanna be a fake...
Right, photospam. Now, I've known Joey for ooh... ten years, I think it is now. I remember walking home from school with her one day and she got incredibly wheezy and Vicky said she be OK to get home but she wasn't so a lady gave us a lift to the hospital in her car. I remember going to Southampton with her to visit Eddie's ship (back when I didn't know he was Satan) and I left her nebuliser in a set of public toilets and when we found it, someone had stolen her medication. I remember buying her a walking stick when it got too hard for her to walk unaided and pushing the shit Red Cross wheelchair to town when it got too much to walk far at all. I remember going to California and Joey needing her nebuliser when we stopped in Chicago and it was in the hold of the plane and everyone blamed us when the plane got delayed for hours even though it was because of the electrical storm and we didn't have a plug adaptor so an air hostess when searching for one in the duty free shops but all she could find were America-Europe/UK ones, not Europe/UK-America ones. I remember the hospital in Alabama that told her she was fine, and having to get off the plane when she stopped breathing as we were taxiing down the runway because she wasn't fine, she had a chest infection and we spent two more weeks out there and her dad sued the hospital. And there's all those blurry nights I've gone with her to hospital and they've poked her with needles and asked me why she's twitching and can they give her steroids and what the hell is VCD anyway?
Now, some people don't have those fun memories, and assume that it's all a big fantasy and every time she has a doctors/hospital appointment, I'm stood out in the waiting room, oblivious, while her and her doctors and sat there giggling, saying "wow, we've really fooled everyone, this is a great game, isn't it?!" I know it's not a game, I have been to a fair few doctors appointments with her, I've seen the huge prescription lists and carried a few boxes of butterfly needles and lines to the car. I've told Joey a thousand times that she doesn't need to prove she's sick, we know she's not lying, her real friends know that, the doctors she sees most often know that. But it only takes a few arrogant doctors with God complexes (hello, Dr Robbins!) and a few mindless morons to say "yeah but no but yeah but yeah she brought that wheelchair and maybe she brought that nebuliser and who says there's ventolin in there, it could be water for all we know and all those pills are really tic-tacs and there's no such thing as brittle asthma and she doesn't have it anyway cos she doesn't use an inhaler and she must like it or she'd take steroids and stop smoking and I can't believe you fell for it!"
Just to go through that, which is the basic arguments I hear, she brought the wheelchair because she needed it and the NHS wouldn't give her one for another two years. The nebuliser was given to her by a charity because she needs one and the NHS ones are too big and bulky and don't have batteries, but she could get one from the NHS if the one she has dies. It's really ventolin. I've picked it up from the pharmacy and put it in the nebuliser and they've not been tampered with. Those pills aren't tic-tacs, or any other kind of sweets, I've collected those from the pharmacy too and dished them out. She doesn't use an inhaler because inhalers are too weak for the advanced asthma she has. She doesn't take steroids because long term steroid use fucks up the body (look up the side effects if you like) and she's taken them so long that they do more damage than good. And she smokes because it's the one pleasure she's allowed and her doctors have admitted that giving up wouldn't make a jot of difference to her lung fuction.
Anyway. Even though we shouldn't need to prove it, I'm going to. Anyone who is still sceptical after this, raise a hand so I can slap you with a medicalert sheet.
Some photos, just to really get the message across.
Some medication. Guess what? They don't give it out for fun. That stuff costs them money. They don't give that much stuff to people for no reason. Here's a little explaination, Joey-style.
Ah, this is my drug corner…the stack of boxes on the left of the screen are all my nebuliser drugs…the group of white and blue boxes next to those are my bricanyl (the syringe driver drug), next to that is my plain saline for making up the syringes when I have to use a new line - so every other day…then you have the alcohol wipes I have to use to stop me getting an infection from the injection sites…then my oramorph - liquid morphine…tis my friend…then my normal painkillers…and at the front of the nebuliser boxes is my steroid inhaler…socks that haven’t been paired up because the other one is still in the wash…then the casing of the bricanyl (the plastic things the ampules sit in when they’re in the box) which I use to keep all the sharps together when I draw it up in the morning…then my pill box which I was just re-doing because the week is over…as well as the red gel pack that can be cold or hot, depending on what I need it for…
More pills. I think you can just about make out the names, in case you wanna go look them up on the internet or ask your doctor to make sure they're real drugs.
Joey on oxygen. They don't give those things out for fun either.
Just in case you were under the impression it was one we'd thieved from the hospital. I like this picture. It's so clear, you can make out the name and date, just in case anyone was thinking it was one she was given years ago and was keeping hidden, just for a rant such as this one. I blurred out the address though.
Yeah, it's on. We're not using it as a kooky decoration.
Sorry if that came out of the left field. I'm not putting this under the cut, it'd just get ignored. Now I'm gonna go make a Snoopy background for Angie and maybe read my new book.
EDIT: Now, this isn't actually aimed at anyone. It's been brought on by the way Joey was treated at the hospital the other night and it brought back a lot of angry memories of patronising doctors telling us they knew more about asthma than she ever would, and housing officers telling us it's not a debilitating disease, and my ex telling me well he knows a woman with ME, BA, VCD, fibro and lung cancer who wasn't as sick as Joey so I'm over-reacting when I leave in the middle of the night with an ambulance crew to make sure they don't kill her. But if you read this and think it's being aimed at you, think about it and ask yourself why you feel that way.
Now, some people don't have those fun memories, and assume that it's all a big fantasy and every time she has a doctors/hospital appointment, I'm stood out in the waiting room, oblivious, while her and her doctors and sat there giggling, saying "wow, we've really fooled everyone, this is a great game, isn't it?!" I know it's not a game, I have been to a fair few doctors appointments with her, I've seen the huge prescription lists and carried a few boxes of butterfly needles and lines to the car. I've told Joey a thousand times that she doesn't need to prove she's sick, we know she's not lying, her real friends know that, the doctors she sees most often know that. But it only takes a few arrogant doctors with God complexes (hello, Dr Robbins!) and a few mindless morons to say "yeah but no but yeah but yeah she brought that wheelchair and maybe she brought that nebuliser and who says there's ventolin in there, it could be water for all we know and all those pills are really tic-tacs and there's no such thing as brittle asthma and she doesn't have it anyway cos she doesn't use an inhaler and she must like it or she'd take steroids and stop smoking and I can't believe you fell for it!"
Just to go through that, which is the basic arguments I hear, she brought the wheelchair because she needed it and the NHS wouldn't give her one for another two years. The nebuliser was given to her by a charity because she needs one and the NHS ones are too big and bulky and don't have batteries, but she could get one from the NHS if the one she has dies. It's really ventolin. I've picked it up from the pharmacy and put it in the nebuliser and they've not been tampered with. Those pills aren't tic-tacs, or any other kind of sweets, I've collected those from the pharmacy too and dished them out. She doesn't use an inhaler because inhalers are too weak for the advanced asthma she has. She doesn't take steroids because long term steroid use fucks up the body (look up the side effects if you like) and she's taken them so long that they do more damage than good. And she smokes because it's the one pleasure she's allowed and her doctors have admitted that giving up wouldn't make a jot of difference to her lung fuction.
Anyway. Even though we shouldn't need to prove it, I'm going to. Anyone who is still sceptical after this, raise a hand so I can slap you with a medicalert sheet.
Some photos, just to really get the message across.
Some medication. Guess what? They don't give it out for fun. That stuff costs them money. They don't give that much stuff to people for no reason. Here's a little explaination, Joey-style.
Ah, this is my drug corner…the stack of boxes on the left of the screen are all my nebuliser drugs…the group of white and blue boxes next to those are my bricanyl (the syringe driver drug), next to that is my plain saline for making up the syringes when I have to use a new line - so every other day…then you have the alcohol wipes I have to use to stop me getting an infection from the injection sites…then my oramorph - liquid morphine…tis my friend…then my normal painkillers…and at the front of the nebuliser boxes is my steroid inhaler…socks that haven’t been paired up because the other one is still in the wash…then the casing of the bricanyl (the plastic things the ampules sit in when they’re in the box) which I use to keep all the sharps together when I draw it up in the morning…then my pill box which I was just re-doing because the week is over…as well as the red gel pack that can be cold or hot, depending on what I need it for…
More pills. I think you can just about make out the names, in case you wanna go look them up on the internet or ask your doctor to make sure they're real drugs.
Joey on oxygen. They don't give those things out for fun either.
Just in case you were under the impression it was one we'd thieved from the hospital. I like this picture. It's so clear, you can make out the name and date, just in case anyone was thinking it was one she was given years ago and was keeping hidden, just for a rant such as this one. I blurred out the address though.
Yeah, it's on. We're not using it as a kooky decoration.
Sorry if that came out of the left field. I'm not putting this under the cut, it'd just get ignored. Now I'm gonna go make a Snoopy background for Angie and maybe read my new book.
EDIT: Now, this isn't actually aimed at anyone. It's been brought on by the way Joey was treated at the hospital the other night and it brought back a lot of angry memories of patronising doctors telling us they knew more about asthma than she ever would, and housing officers telling us it's not a debilitating disease, and my ex telling me well he knows a woman with ME, BA, VCD, fibro and lung cancer who wasn't as sick as Joey so I'm over-reacting when I leave in the middle of the night with an ambulance crew to make sure they don't kill her. But if you read this and think it's being aimed at you, think about it and ask yourself why you feel that way.