Wednesday, August 22, 2012
Stopping Med; Slow Suicide
Click To Read CIANNE NAJI Article In The Irish Times
On Facebook, a friend puts up this article. One of the comments suggested she is almost inspirational, lovely spirit, lovley story, fierce character, and could see why she is doing this. On the other hand there were fewer people saying basically that the idea is idiotic. I'm in the second group. There are few things in life that really annoy me, and stick in my head for a few days. This is one of those things.
I put my two cents in saying that her idea is a rebellious infintile decision and Cianne replied. Her reason for this stupid decision is that she has had a good life and she doesn't want to spend the ret of her life in and out of hospital. As you can read, she was an international wake border. So she would have had to be somewhat fit and healthy. She had a bad turn with CF, and now she sees this as "it's better to have loved and lost to have not loved at all". I don't normally say that people's ideas are stupid or ridiculous, but hers is.
Like I said on Facebook, she can take it as a personal attack if she wants because it basically is. She's only 21 and decides to pack it in because she has LIVED a good life. I hope she's reading this now and realises how idiotic her decisions are. On the other hand, it's probably going to make her rebel more. Something like what a teenager does when they have a fight with their parents. They rebel against them no matter what.
She says her parents are supportive in her decision. Well Cianne, your an adult and thats they way they are treating you, but your decisions are that of a child. But what you are doing is 100% selfish. Your parents are the ones who are going to have to live with burring their child. NO parent wants that.
By publically speaking about this automatically means you advocate not taking meds. I can't take anything else from this article other then her trying to promote her business. There is actually no need for this article whatsoever, and I'm surprised that The Irish Times even published it.
This is suicide. No matter what way you want to look at it. It's suicide.
Iv been knocked down so many times by CF and iv gotten back up more times then i have been knocked down. So if your reading this, I hope it changes your mind and makes you get some sense in your thinking. Your only 21. To have lived "a good life" doesn't mean you make the decision to stop meds to stop your life.
So Cianne, stop being an idiot and start taking your meds.
Adios
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ReplyDeleteDear Evan,
DeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation. You dont know what your talking about.
It's very frustrating for me to read because it sounds like she's still in denial about her CF with regard to treatment, etc. Maybe if she posted in the UK CF Forum it would be a good thing because a lot of people have been in the situation she is in and could give her a new perspective on this?
ReplyDeleteMRSA should not stop her getting a transplant, at least at some UK transplant centers that are availble.
Nebulisers don't take 2 hours - my Ineb takes 15 minutes a day to deliver 3 seperate doses
I could go on...
Dear Evan,
DeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation. You dont know what your talking about.
Post it on the UK CF forum and link them to here so they can leave a comment. I will Facebook her the links so she can read them. She is in denial and has probably read this blog post several times to see if anyone has commented on it saying I am the fool and not her.
ReplyDeleteDear Evan,
DeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation. You dont know what your talking about.
The article was a hard read. On one hand I want to say it is her life, she can do what she wants but on the other I want to tell her to stop and think, really think what she is doing not just herself but to her family. My sister passed away just over a year ago (she didn't have cf, it was a total shock and very sudden) and I will do whatever it takes to try to prevent my parents having to go through that again.
ReplyDeleteMy lf sits around the low 40% mark( when I'am well) and yes, things can be a pain sometimes (ok- a lot of the time), but life is worth fighting for.
Dear Evan,
DeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation. You dont know what your talking about.
This comment has been removed by the author.
ReplyDeleteDear Evan,
DeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation. You dont know what your talking about.
Dear Evan,
ReplyDeleteI read this post after you sent me the link and this is only the second time since then i have read it, and only because i was informed you are deleting comments from anyone with a different opinion to yours. I actually shared the link on my page saying that everyone was entitled to their opinion. I dont think theres any need to post some of the replies i got but im sure you can imagine. And there was a lot.
As to not fuel what you yourself have called a 'personal attack' on me, or to encourage this ridiculous vendetta that you have started im going to make this brief.
I did not go into medical issues in the article because thats not always something the public can understand but for those of you who are accusing me of giving up or being in denial its important you understand that MRSA is the least of my problems. I have one strain of bacteria that has never been treated in Ireland, actually the only living specialist is in France and we have contacted him too. The micro biologist here had only ever heard of it in one other case. BUT never the less i tried the 6 month, 14 IV a day treatment the specialist recommended, that included side effects that im not going to even begin to describe. I have 7 other bugs. I have been treated in Holland, Switzerland, the US and here.
I do not do the the meds because 9 times out of 10, THEY DO NOT WORK. A transplant is not an option, because of medical issues. I am considered non compliant because sometimes when i get sick its one of the treatable bugs that is flaring up and those the meds work on. But we can never tell untill after 2 weeks of treatments as an impatient. Im in now treating an inflammation. But Evan you have never actually done treatments, or actually ever been admitted to hospital so although you think you are clearly the worlds best person to be giving me advice on my life, you havnt experienced half the crap that actually comes with it. Maybe come down off that high horse of yours, walk in my shoes for a week, and then try be the expert your so convinced you are?
My family have gone through this with me from the start. They have been there at every lung function test that never went up, they have seen me lose everything i worked very hard for. And they completely agreed with me when i made the decision to stop treating because they couldn't bare watching me do this anymore. It was a combined decision. We took the facts and the figures, sat down and made a realistic plan. We worked out that everyone, especially myself, would be a lot happier if i just lived what i have left to the fullest and stopped trying to treat something that cannot be fixed.
I agree life is precious. And people have lost theres for a lot less then this and we should appreciate everyday we have on this planet. I agree that taking your meds and fighting this is the best way of life for the average case and i agree that my choices are controversial and risky. But i live by, and i always have, the theory that the sole factor that defines your life is happiness. And i would choose 2 months of happiness over a year of sadness and pain. I would choose 2 months of my parents seeing me laugh over a year of them seeing me in agony and they totally agree with that. Actually im so protective and aware of how this could affect the people i care about i dont allow anyone into the hospital when im ill so they dont have to watch me like this. They only see me out. On no meds. Living. Happy.
I am sorry if the article has offended anyone, that of course was never my intention. Evan you have taken this to far. Let it go. My life, my story, my situation.
Firstly Cianne, I HAVE NEVER DELETED A COMMENT AND I NEVER WILL.
ReplyDeleteSecondly, this is a turn around in attitude from the last time we spoke. You seem to be seeking help now. And if you are, then great. If you aren't, then my opinion stays the same. As you can see the posts here, everyone thinks the same as me so the 58 people who inboxed you is either a lie or just is crazy.
Thirdly, you posted a comment on your Facebook saying you shared my blog to "calm me down" and "doesn't he sound like a nice fellow" so don't come on here acting as if you all innocent and for people to take pity on you.
I'm not doing this to piss you off. I'm doing it so you might change your mind, and hopefully you do in time.
I'm totally honest on this blog and won't sugarcoat anything. So if I feel annoyed, frustrated, confused, or whatever other adjective you can use to describe how your story has made me feel, I will post it up. So why would I delete a comment agreeing with your idea?? Makes no sense.
Wow people are being so judgemental. I have CF and am starting to see the decline and although I pray its just a dip you never know. I have decided not to have children as I wouldn't want my child growing up without a mum but does that mean I think every other person with CF should think the same way? no of course not thats a personal choice that I have no right to judge you on and I do thin Evan you are been very very harsh. You are lucky your lungs are good enough to run that far and yes you will probably be healther for it but what right does that give you to start a witch hunt on this poor girl. Its her life her decision it doesn't effect you in the slightest I think that Cianne has been very respectful, I wouldn't have I would of told you where to go! As long as her family are at peace with her decision then what the hell does it have to do with you? She isn't taking your life. If when the times comes I am tired of fighting and want to stop I will and my parents would support me in that. I certainly wouldn't be seeking the approval of somebody I have only ever spoken to on FB!
ReplyDelete