Wow! Lots of negativity going on here right now!

Havoc

New member
He has a point, though. I think maybe some of it got lost in translation, because English is obviously not his first language. While I do think CF is a legitimate disease, it's also a HUGE business. As are AIDS, cancer, heart disease and more recently, psychological problems. I read a statistic recently ( the numbers I can't remember), but there are a staggering number of Americans on psychotropic meds (SSRI's TCA's MAOI's atypicals). I know personally they tried me on lots of those meds when I began having insomnia and they either made it worse or didn't do anything at all. Pharmaceutical companies are now marketing to the patients. Years ago they spoke with the docs, now you can't watch TV for 15 minutes without seeing a commercial for a medication and be prompted to ask your doctor about prescribing it. You bet your ass it's a business. The point he was trying to make, I think, is that it's ridiculous the amount of time spent in clinics and medications that CFers are required to take. Me for example, 70 miles to the nearest clinic at $4.00/gallon of gasoline. Copays between $5-$30 for medications and $20 for specialist visits. And it's getting worse now that the CF docs are farming out everything that isn't pulmonary. Now I have a sleep specialist, an ENT surgeon, an orthopedist and my PCP, all with their own copays and all the same 70 miles (with the exception of my PCP, which is 30) away. I cut waaay down on the medications that I take. Basically I cut everything but the enzymes and my sleep meds (valium). I have inhalers that I use if needed, which rarely happens. I also use Flonase in allergy season. That's it. I also cut my clinic time, I go to clinic about once a year. The strange thing is that after cutting out a lot of the medications, my health improved. My PFT's went up, my weight went up. Also, when I switched to Creon, I cut the dose drastically. I realize that there's 400 extra units of Lipase, but I went from 8-10 Zenpep 20 to 3 Creon 24's, with no ill effects. Obviously, I didn't need all the medications they were giving me (I think at one point I was up to 10 different meds). It was nothing to spend close to $200/month for just Rx copays. Here's my problem with this forum. When that thread came up, everyone got their knickers in a twist and flamed the crap out of that poor guy. To the point of him leaving the site. Leave your bloody emotions at the door. Did anyone think to direct him to some literature that explained CF, especially something in his first language? Maybe the doc he took his daughter to did a horrible job at explaining things, maybe he wasn't even a CF doc. Many of the people that flamed on that thread are the same people I've seen preach "this is a support site" on other threads. If that guy is in denial, or if he's just overwhelmed at the cost of caring for a child with CF, you failed miserably at trying to offer him support. Of course, since he is no longer here, we won't know. I find it ridiculous that a person would respond that way because they were offended. What a load of sh*t. Are you really so sensitive? A lot of you really need to develop a brain/mouth filter and keep posts relevant and supported by facts. Unless of course someone asks for some kind of emotional response. I want you all to think really hard about what you said and think about how much your venomous words might cost his daughter. A story I think is appropriate here comes from a woman who was incarcerated in Auschwitz. Her family was taken there and on the train and she noticed her brother did not have his shoes on. She said to him "how could you be so stupid and not wear your shoes." She was the only one to survive the concentration camp and had to live the rest of her life knowing that the last thing she said to her brother was admonishment. When she was set free, she vowed never to say anything that couldn't stand for the last thing she ever said to somebody. I think we should all try to live up to that standard.
 

Havoc

New member
<p>He has a point, though. I think maybe some of it got lost in translation, because English is obviously not his first language. <br /> <br />While I do think CF is a legitimate disease, it's also a HUGE business. As are AIDS, cancer, heart disease and more recently, psychological problems. I read a statistic recently ( the numbers I can't remember), but there are a staggering number of Americans on psychotropic meds (SSRI's TCA's MAOI's atypicals). I know personally they tried me on lots of those meds when I began having insomnia and they either made it worse or didn't do anything at all. <br /> <br />Pharmaceutical companies are now marketing to the patients. Years ago they spoke with the docs, now you can't watch TV for 15 minutes without seeing a commercial for a medication and be prompted to ask your doctor about prescribing it. You bet your ass it's a business. <br /> <br />The point he was trying to make, I think, is that it's ridiculous the amount of time spent in clinics and medications that CFers are required to take. Me for example, 70 miles to the nearest clinic at $4.00/gallon of gasoline. Copays between $5-$30 for medications and $20 for specialist visits. And it's getting worse now that the CF docs are farming out everything that isn't pulmonary. Now I have a sleep specialist, an ENT surgeon, an orthopedist and my PCP, all with their own copays and all the same 70 miles (with the exception of my PCP, which is 30) away. <br /> <br />I cut waaay down on the medications that I take. Basically I cut everything but the enzymes and my sleep meds (valium). I have inhalers that I use if needed, which rarely happens. I also use Flonase in allergy season. That's it. I also cut my clinic time, I go to clinic about once a year. The strange thing is that after cutting out a lot of the medications, my health improved. My PFT's went up, my weight went up. Also, when I switched to Creon, I cut the dose drastically. I realize that there's 400 extra units of Lipase, but I went from 8-10 Zenpep 20 to 3 Creon 24's, with no ill effects. Obviously, I didn't need all the medications they were giving me (I think at one point I was up to 10 different meds). It was nothing to spend close to $200/month for just Rx copays.<br /> <br />Here's my problem with this forum. When that thread came up, everyone got their knickers in a twist and flamed the crap out of that poor guy. To the point of him leaving the site. Leave your bloody emotions at the door. Did anyone think to direct him to some literature that explained CF, especially something in his first language? Maybe the doc he took his daughter to did a horrible job at explaining things, maybe he wasn't even a CF doc. <br /> <br />Many of the people that flamed on that thread are the same people I've seen preach "this is a support site" on other threads. If that guy is in denial, or if he's just overwhelmed at the cost of caring for a child with CF, you failed miserably at trying to offer him support. Of course, since he is no longer here, we won't know. <br /> <br />I find it ridiculous that a person would respond that way because they were offended. What a load of sh*t. Are you really so sensitive? A lot of you really need to develop a brain/mouth filter and keep posts relevant and supported by facts. Unless of course someone asks for some kind of emotional response. <br /> <br />I want you all to think really hard about what you said and think about how much your venomous words might cost his daughter. <br /> <br />A story I think is appropriate here comes from a woman who was incarcerated in Auschwitz. Her family was taken there and on the train and she noticed her brother did not have his shoes on. She said to him "how could you be so stupid and not wear your shoes." She was the only one to survive the concentration camp and had to live the rest of her life knowing that the last thing she said to her brother was admonishment. When she was set free, she vowed never to say anything that couldn't stand for the last thing she ever said to somebody. I think we should all try to live up to that standard.
 

krisgabes

New member
Havoc, I think a lot of people responded because of his tone. I'm sorry but when someone comes out and says "open your eyes" that CF is a business, I am not going to welcome them with open arms. Sorry if that makes me a bad person. Secondly his responses in no way appeared to reflect that he was asking for our support or help regarding his daughter. He was trying to convince others that his way was right. Perhaps you related to what he was saying because it seems like you take your CF care into your own hands by not doing some treatments, etc. Maybe it works for you, or maybe it is just too early to tell. Most of us are hooking ourselves up to nebs for 4 hours in total a day, and I know personally I'm on 13 Creon 24s with each meal and 16 other pills on top of it a day. I'm also facing a need for a liver transplant. No one is going to tell me to open my eyes to my disease. My eyes are wide open and I know what is going on. I'm GRATEFUL for pharmaceutical companies, maybe I'm the only one. But without them I would be dying. I know no one will probably agree with this message but I stand by it. That is what struck a chord with me regarding his post. I wished him luck, hoped that he wasn't just a troll stirring a pot. And then I have to stare at that post sitting underneath the post that my friend, Countrygirl, died, for weeks. It offended me. She knew what CF was, and she knew this was no business.
 

krisgabes

New member
Havoc, I think a lot of people responded because of his tone. I'm sorry but when someone comes out and says "open your eyes" that CF is a business, I am not going to welcome them with open arms. Sorry if that makes me a bad person. Secondly his responses in no way appeared to reflect that he was asking for our support or help regarding his daughter. He was trying to convince others that his way was right. Perhaps you related to what he was saying because it seems like you take your CF care into your own hands by not doing some treatments, etc. Maybe it works for you, or maybe it is just too early to tell. Most of us are hooking ourselves up to nebs for 4 hours in total a day, and I know personally I'm on 13 Creon 24s with each meal and 16 other pills on top of it a day. I'm also facing a need for a liver transplant. No one is going to tell me to open my eyes to my disease. My eyes are wide open and I know what is going on. I'm GRATEFUL for pharmaceutical companies, maybe I'm the only one. But without them I would be dying. I know no one will probably agree with this message but I stand by it. That is what struck a chord with me regarding his post. I wished him luck, hoped that he wasn't just a troll stirring a pot. And then I have to stare at that post sitting underneath the post that my friend, Countrygirl, died, for weeks. It offended me. She knew what CF was, and she knew this was no business.
 

krisgabes

New member
Havoc, I think a lot of people responded because of his tone. I'm sorry but when someone comes out and says "open your eyes" that CF is a business, I am not going to welcome them with open arms. Sorry if that makes me a bad person. Secondly his responses in no way appeared to reflect that he was asking for our support or help regarding his daughter. He was trying to convince others that his way was right. Perhaps you related to what he was saying because it seems like you take your CF care into your own hands by not doing some treatments, etc. Maybe it works for you, or maybe it is just too early to tell. Most of us are hooking ourselves up to nebs for 4 hours in total a day, and I know personally I'm on 13 Creon 24s with each meal and 16 other pills on top of it a day. I'm also facing a need for a liver transplant. No one is going to tell me to open my eyes to my disease. My eyes are wide open and I know what is going on. I'm GRATEFUL for pharmaceutical companies, maybe I'm the only one. But without them I would be dying. I know no one will probably agree with this message but I stand by it. That is what struck a chord with me regarding his post. I wished him luck, hoped that he wasn't just a troll stirring a pot. And then I have to stare at that post sitting underneath the post that my friend, Countrygirl, died, for weeks. It offended me. She knew what CF was, and she knew this was no business.
 

hmw

New member
This is an important point to make. We should not forget basic respect and decency for each other.

Strong feelings and/or conflicting views are to be expected, esp. regarding certain topics, and that is OK. Thanks for clarifying negativity vs. disrespect- because there is clearly a difference. Negativity has it's place and time (after all, it's balanced out by plenty of other threads encompassing many other emotions and topics here) when people need to vent or when certain things happen (deaths or other circumstances) but disrespect has no place. <img src="i/expressions/rose.gif" border="0">
 

hmw

New member
This is an important point to make. We should not forget basic respect and decency for each other.

Strong feelings and/or conflicting views are to be expected, esp. regarding certain topics, and that is OK. Thanks for clarifying negativity vs. disrespect- because there is clearly a difference. Negativity has it's place and time (after all, it's balanced out by plenty of other threads encompassing many other emotions and topics here) when people need to vent or when certain things happen (deaths or other circumstances) but disrespect has no place. <img src="i/expressions/rose.gif" border="0">
 

hmw

New member
This is an important point to make. We should not forget basic respect and decency for each other.
<br />
<br />Strong feelings and/or conflicting views are to be expected, esp. regarding certain topics, and that is OK. Thanks for clarifying negativity vs. disrespect- because there is clearly a difference. Negativity has it's place and time (after all, it's balanced out by plenty of other threads encompassing many other emotions and topics here) when people need to vent or when certain things happen (deaths or other circumstances) but disrespect has no place. <img src="i/expressions/rose.gif" border="0">
 

hmw

New member
I also don't like being told in a condescending way how to view the disease... I sure agree with that point Kristen (and others who posted similar points.) We put HOURS a day into trying to keep Emily healthy, already see her losing ground, and she's only in 4th grade. It's incredibly frustrating.
 

hmw

New member
I also don't like being told in a condescending way how to view the disease... I sure agree with that point Kristen (and others who posted similar points.) We put HOURS a day into trying to keep Emily healthy, already see her losing ground, and she's only in 4th grade. It's incredibly frustrating.
 

hmw

New member
I also don't like being told in a condescending way how to view the disease... I sure agree with that point Kristen (and others who posted similar points.) We put HOURS a day into trying to keep Emily healthy, already see her losing ground, and she's only in 4th grade. It's incredibly frustrating.
 

Havoc

New member
I never said he was completely right, I just made the point that his claims had some truth. Healthcare is a huge business, and it's true that without it, most of us (including me) would be dead. It's a business, just the same.
<br>
<br>I make choices about my own treatment in conjunction with my docs. My education helps with that. I study everything there is to know about the medications I take, or the ones they want to put me on. If I decide it's worth a try, I make sure and watch for any improvement or side effects. Most did not have any noticeable positive effect. Part of my dropping a lot of meds was because I didn't want to fry my liver.
<br>
<br>Why some CFers seem to be so sick and others like me get away with next to no treatments, I don't know. I realize I probably won't enjoy that luxury forever, but I'm almost 30 and at least as healthy as my non-CF friends.
<br>
<br>As healthcare professionals, it's sometimes easy to give a medication because we can, not because it's absolutely necessary. To that end, it behooves you to understand your disease and your medication.
<br>
<br>The point is that no matter how skewed his view on CF is, we should have been the ones to educate him, rather than berate him.<br>ETA:  Regadring tone, being that English isn't his first language and it's hard to interpret tone in typed messages, that's a pretty shaky basis for condescention.<br>
 

Havoc

New member
I never said he was completely right, I just made the point that his claims had some truth. Healthcare is a huge business, and it's true that without it, most of us (including me) would be dead. It's a business, just the same.
<br>
<br>I make choices about my own treatment in conjunction with my docs. My education helps with that. I study everything there is to know about the medications I take, or the ones they want to put me on. If I decide it's worth a try, I make sure and watch for any improvement or side effects. Most did not have any noticeable positive effect. Part of my dropping a lot of meds was because I didn't want to fry my liver.
<br>
<br>Why some CFers seem to be so sick and others like me get away with next to no treatments, I don't know. I realize I probably won't enjoy that luxury forever, but I'm almost 30 and at least as healthy as my non-CF friends.
<br>
<br>As healthcare professionals, it's sometimes easy to give a medication because we can, not because it's absolutely necessary. To that end, it behooves you to understand your disease and your medication.
<br>
<br>The point is that no matter how skewed his view on CF is, we should have been the ones to educate him, rather than berate him.<br>ETA: Regadring tone, being that English isn't his first language and it's hard to interpret tone in typed messages, that's a pretty shaky basis for condescention.<br>
 

Havoc

New member
<p>I never said he was completely right, I just made the point that his claims had some truth. Healthcare is a huge business, and it's true that without it, most of us (including me) would be dead. It's a business, just the same.
<br>
<br>I make choices about my own treatment in conjunction with my docs. My education helps with that. I study everything there is to know about the medications I take, or the ones they want to put me on. If I decide it's worth a try, I make sure and watch for any improvement or side effects. Most did not have any noticeable positive effect. Part of my dropping a lot of meds was because I didn't want to fry my liver.
<br>
<br>Why some CFers seem to be so sick and others like me get away with next to no treatments, I don't know. I realize I probably won't enjoy that luxury forever, but I'm almost 30 and at least as healthy as my non-CF friends.
<br>
<br>As healthcare professionals, it's sometimes easy to give a medication because we can, not because it's absolutely necessary. To that end, it behooves you to understand your disease and your medication.
<br>
<br>The point is that no matter how skewed his view on CF is, we should have been the ones to educate him, rather than berate him.<p><br><p>ETA: Regadring tone, being that English isn't his first language and it's hard to interpret tone in typed messages, that's a pretty shaky basis for condescention.<br>
 

krisgabes

New member
I understand what you're saying, but the way it was presented wasn't the best format, and I'm not sure it was a lost in translation deal. When you spend so much of your life suffering from a chronic illness and to have someone tell you it's not real is enough to make anyone defensive. I was not up for discussion after feeling so offended. But that is just a person to person basis. We are wired differently.
 

krisgabes

New member
I understand what you're saying, but the way it was presented wasn't the best format, and I'm not sure it was a lost in translation deal. When you spend so much of your life suffering from a chronic illness and to have someone tell you it's not real is enough to make anyone defensive. I was not up for discussion after feeling so offended. But that is just a person to person basis. We are wired differently.
 

krisgabes

New member
I understand what you're saying, but the way it was presented wasn't the best format, and I'm not sure it was a lost in translation deal. When you spend so much of your life suffering from a chronic illness and to have someone tell you it's not real is enough to make anyone defensive. I was not up for discussion after feeling so offended. But that is just a person to person basis. We are wired differently.
 

Printer

Active member
On April 15, 2011, a woman by the name of Kristen LaBrie was convicted in the Lawrence, Massachusetts Superior Court of Attemped Murder.  Her crime, she refused to give her eight year old son his cancer medications.  He died.
I don't know if english is her second language.  I do know that she had a number of reasons (excuses).  Maybe she thought Cancer is a BUSINESS.  Maybe she didn't think that Cancer is a real disease.  Frankly, I don't care.  The jury convicted her in less than five hours.
The individual that posted the BUSINESS foolishness and those who agree (and defend him) are like Kristen LaBrie. 
My hope is that the child with CF gets the medical help that she needs, even if it means that the Goverment needs to step in and take the child from her father.
There were three issues in his posting; Cf is a business, there is no such disease as CF and I'm not going to have my child treated because I know better than everyone. 
For anyone here to comment in a positive manner on this situation is to support and to enable this mentally disturbed individual.
It would be nice if this site could get back to being a education/support venue.
 
 
 

Printer

Active member
On April 15, 2011, a woman by the name of Kristen LaBrie was convicted in the Lawrence, Massachusetts Superior Court of Attemped Murder. Her crime, she refused to give her eight year old son his cancer medications. He died.
I don't know if english is her second language. I do know that she had a number ofreasons (excuses). Maybe she thought Cancer is a BUSINESS. Maybe she didn't think that Cancer is a real disease. Frankly, I don't care. The jury convicted her in less than five hours.
The individual that posted the BUSINESS foolishness and those who agree (and defend him) are like Kristen LaBrie.
My hope is that the child with CF gets the medical help that she needs, even if it means that the Goverment needs to step in and take the child from her father.
There were three issues in his posting; Cf is a business, there is no such disease as CF and I'm not going to have my child treated because I know better than everyone.
For anyone here to comment in a positive manner on this situation is to support and to enable this mentally disturbed individual.
It would be nice if this site could get back to being a education/support venue.
 

Printer

Active member
<p>On April 15, 2011, a woman by the name of Kristen LaBrie was convicted in the Lawrence, Massachusetts Superior Court of Attemped Murder. Her crime, she refused to give her eight year old son his cancer medications. He died.
<p>I don't know if english is her second language. I do know that she had a number ofreasons (excuses). Maybe she thought Cancer is a BUSINESS. Maybe she didn't think that Cancer is a real disease. Frankly, I don't care. The jury convicted her in less than five hours.
<p>The individual that posted the BUSINESS foolishness and those who agree (and defend him) are like Kristen LaBrie.
<p>My hope is that the child with CF gets the medical help that she needs, even if it means that the Goverment needs to step in and take the child from her father.
<p>There were three issues in his posting; Cf is a business, there is no such disease as CF and I'm not going to have my child treated because I know better than everyone.
<p>For anyone here to comment in a positive manner on this situation is to support and to enable this mentally disturbed individual.
<p>It would be nice if this site could get back to being a education/support venue.
<p>
<p>
 
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