I'm No Scrooge, But Here's What Irks Me

[anonymous]

I always try to consider the intentions, because a lot of people just don't know. All I meant was people around here, people like us, that do know and say that stuff. That drives me up a damn wall, because unless it's clear that they're not blaming dead CFers, it sounds like they are. If that makes sense.


Hi Emily

I know what you mean but I have found that many people when they write or talk say what they are thinking Without considering other people's feelings. Most people who are trying to help really cannot but they mean well. I think when you mention that people are blamming people with cf who died they are trying to deal with themselves and that is very difficult. They are probably writing from their own fear and their own selfishness but I do believe that their intentions are well intended unless they are really mean. IT is good that you are aware of what you say and how others perceive you but most people are just ignorant in their speech.

To those of you who cannot deal with death and CF in a kind manner please stay out of the conversation as you do not want to offend or insult anyone on this wonderful forum. If people on this forum insult others you should report to the moderator.

Risa

 

[anonymous]

I always try to consider the intentions, because a lot of people just don't know. All I meant was people around here, people like us, that do know and say that stuff. That drives me up a damn wall, because unless it's clear that they're not blaming dead CFers, it sounds like they are. If that makes sense.


Hi Emily

I know what you mean but I have found that many people when they write or talk say what they are thinking Without considering other people's feelings. Most people who are trying to help really cannot but they mean well. I think when you mention that people are blamming people with cf who died they are trying to deal with themselves and that is very difficult. They are probably writing from their own fear and their own selfishness but I do believe that their intentions are well intended unless they are really mean. IT is good that you are aware of what you say and how others perceive you but most people are just ignorant in their speech.

To those of you who cannot deal with death and CF in a kind manner please stay out of the conversation as you do not want to offend or insult anyone on this wonderful forum. If people on this forum insult others you should report to the moderator.

Risa

 

[anonymous]

Message 4 Lizard Queen. I was just curious. I only registered with the Forum yesterday and I have been reading your messages for a couple of months now. I have two daughters, eldest 4 yrs and youngest 2 years, youngest daughter has CF and was diagnosed and 6 weeks old. Obviously she doesn't know anything yet. I hope she turns out to be like you! She has Pseudo at the moment and has to do nebuliser twice a day. It was first picked up in a cough swab when she was 10 months old and came back again exactly a year later.

Charlotte

 

[anonymous]

Message 4 Lizard Queen. I was just curious. I only registered with the Forum yesterday and I have been reading your messages for a couple of months now. I have two daughters, eldest 4 yrs and youngest 2 years, youngest daughter has CF and was diagnosed and 6 weeks old. Obviously she doesn't know anything yet. I hope she turns out to be like you! She has Pseudo at the moment and has to do nebuliser twice a day. It was first picked up in a cough swab when she was 10 months old and came back again exactly a year later.

Charlotte

 

[thelizardqueen]

Charlotte - as I've only read some of your posts, and I do know that one of your daughters has CF - do you yourself have CF? I'm not sure if you mentioned this or not. 2 years old is quite young to know about CF, but I find that the fact my mother told me at a very young age made me the person I am today. The fact that her and I had a very open relationship, and didn't sugar coat things for me, made me think that I wasn't the only one fighting for myself. That she was fighting with me, and told me EVERYTHING (good and bad) about CF so that I was well informed and equipped to fight it.

ps. you made my day with the "hope she turns out to be like you!" comment, fingers crossed that her CF takes on a mild form for quite a number of years to come. If ever you want to chat be it email or msn, here's my addy: lizd1981@hotmail.com

 

[thelizardqueen]

Charlotte - as I've only read some of your posts, and I do know that one of your daughters has CF - do you yourself have CF? I'm not sure if you mentioned this or not. 2 years old is quite young to know about CF, but I find that the fact my mother told me at a very young age made me the person I am today. The fact that her and I had a very open relationship, and didn't sugar coat things for me, made me think that I wasn't the only one fighting for myself. That she was fighting with me, and told me EVERYTHING (good and bad) about CF so that I was well informed and equipped to fight it.

ps. you made my day with the "hope she turns out to be like you!" comment, fingers crossed that her CF takes on a mild form for quite a number of years to come. If ever you want to chat be it email or msn, here's my addy: lizd1981@hotmail.com

 

[anonymous]

Hiya,

I don't have CF, just my youngest daughter, picked up on screening when she was 6 weeks old. Thanks for all your messages today. I'm glad I made your day! I live in the UK by the way, and am 33 years old. Also, got another daughter who is 4 years old. Thanks 4 being so honest about Pseudo. My daughter's Consultant hasn't been as honest as you. They just seem to be waiting for us to ask the question if you know what I mean?! How old were you when you had IVs for it?

Charlotte

 

[anonymous]

Hiya,

I don't have CF, just my youngest daughter, picked up on screening when she was 6 weeks old. Thanks for all your messages today. I'm glad I made your day! I live in the UK by the way, and am 33 years old. Also, got another daughter who is 4 years old. Thanks 4 being so honest about Pseudo. My daughter's Consultant hasn't been as honest as you. They just seem to be waiting for us to ask the question if you know what I mean?! How old were you when you had IVs for it?

Charlotte

 

[thelizardqueen]

I cultured pseudo when I was 8 years old. I didn't go on IVs for it till I was 15, and I haven't been on IV's since and I'm 24. Oral Cipro and oral Levequin worked fine for me. I didn't go on TOBI till I was 13 (this is when they first introduced the drug to my clinic). My doc never wanted to put me on IVs because he worried that I would build up an immunity to them, and then later on in life when I really needed them, they wouldn't work for me. There's also a lot of sulpha based drugs that your daughter can take. I can't however because I have an allergy from when I was a baby, but if put in hospital I could be weaned on to them. I just look at sulpha drugs, as more drugs that will be available to me in the long run. If your daughters oral cipro, or inhaled TOBI is working, and getting rid of her infection i.e. she's not coughing or sick, then I wouldn't put her on IV's. That's just me though. You have to go with your gut instinct. My mum worked with her gut instinct and kept me off IVs for as long as she could. Docs like to push drugs whenever possible, and I think its too soon to tell if TOBI is working for her. But remember, she is your daughter, and you do have final say in what her treatment is. Sometimes you just have to put your foot down if you don't agree with something. Is she on one month, off one month with TOBI?

You don't need to go on IV's simply because you have pseudo. Every CF person cultures pseudo eventually. You can't get rid of it, but you can control it. Let me know if you have any other questions. My email/msn addy is lizd1981@hotmail.com

 

[thelizardqueen]

I cultured pseudo when I was 8 years old. I didn't go on IVs for it till I was 15, and I haven't been on IV's since and I'm 24. Oral Cipro and oral Levequin worked fine for me. I didn't go on TOBI till I was 13 (this is when they first introduced the drug to my clinic). My doc never wanted to put me on IVs because he worried that I would build up an immunity to them, and then later on in life when I really needed them, they wouldn't work for me. There's also a lot of sulpha based drugs that your daughter can take. I can't however because I have an allergy from when I was a baby, but if put in hospital I could be weaned on to them. I just look at sulpha drugs, as more drugs that will be available to me in the long run. If your daughters oral cipro, or inhaled TOBI is working, and getting rid of her infection i.e. she's not coughing or sick, then I wouldn't put her on IV's. That's just me though. You have to go with your gut instinct. My mum worked with her gut instinct and kept me off IVs for as long as she could. Docs like to push drugs whenever possible, and I think its too soon to tell if TOBI is working for her. But remember, she is your daughter, and you do have final say in what her treatment is. Sometimes you just have to put your foot down if you don't agree with something. Is she on one month, off one month with TOBI?

You don't need to go on IV's simply because you have pseudo. Every CF person cultures pseudo eventually. You can't get rid of it, but you can control it. Let me know if you have any other questions. My email/msn addy is lizd1981@hotmail.com

 

[anonymous]

i do believe in God but in no way do I feel that if I didn't I would die because of it. If people die young, they just do and that has nothing to do with God. The other one i HATE is the "God gives people what they can handle". Some of my friends really believe in this and I think it is crap. I don't think that God has anything to do with why some people have diseases and some don't. And He doesn't give us only what we can handle. People handle things because they have to not because of God. and that is my rant

Sue 23

 

[anonymous]

i do believe in God but in no way do I feel that if I didn't I would die because of it. If people die young, they just do and that has nothing to do with God. The other one i HATE is the "God gives people what they can handle". Some of my friends really believe in this and I think it is crap. I don't think that God has anything to do with why some people have diseases and some don't. And He doesn't give us only what we can handle. People handle things because they have to not because of God. and that is my rant

Sue 23

 

[anonymous]

Well I don't follow organized religions myself, but I believe that faith can make someone strong for the obsticles in life they will face. Also the Jews do believe in Jesus... they just don't believe he was resurected, and they think the chosen one is still yet to come.

It would never be someone's fault if they died from CF, but I have certainly known some people that have been reckless with their health, and I don't have any doubt it led to the progression of the disease. Some people do sit by and wait for death to come. I just saw a thread here that a person heard doctors tell his/her parents that he/she wouldn't live through highschool, so that child grew up waiting for death... Obviously they have beaten death so far, and at age 30 something (can't remember the age) they are still here, and realize waiting for death was a waste of time. It doesn't change the fact that some people give up on life... heck people without CF give up on life.

I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.

I'm just stating it as I see it.
Have a nice day, and keep strong.

 

[anonymous]

Well I don't follow organized religions myself, but I believe that faith can make someone strong for the obsticles in life they will face. Also the Jews do believe in Jesus... they just don't believe he was resurected, and they think the chosen one is still yet to come.

It would never be someone's fault if they died from CF, but I have certainly known some people that have been reckless with their health, and I don't have any doubt it led to the progression of the disease. Some people do sit by and wait for death to come. I just saw a thread here that a person heard doctors tell his/her parents that he/she wouldn't live through highschool, so that child grew up waiting for death... Obviously they have beaten death so far, and at age 30 something (can't remember the age) they are still here, and realize waiting for death was a waste of time. It doesn't change the fact that some people give up on life... heck people without CF give up on life.

I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.

I'm just stating it as I see it.
Have a nice day, and keep strong.

 

[anonymous]

Who was that post for?!

 

[anonymous]

Who was that post for?!

 

[thelizardqueen]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.<hr></blockquote>


I've never condemned someone on here becaue of a questions they've asked, and I don't recall seeing other people on here do that either. If anything, the people on this forum are full of information, and are always here to lend a helping hand as best they can.

 

[thelizardqueen]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.<hr></blockquote>


I've never condemned someone on here becaue of a questions they've asked, and I don't recall seeing other people on here do that either. If anything, the people on this forum are full of information, and are always here to lend a helping hand as best they can.

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>
I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.<hr></blockquote>

I don't condemn for questions either. What I "condemn" is when people say things that very much insinuate that it's, say, Ry's fault he died at 31. Allie has heard that before, and we had talked about it, and that's why I asked. Because I think that's crap.

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>
I also have noticed that many people <b>HERE</b> jump to conclusions, and persecute others all too quickly. That irritates the heck out of me! <img src="i/expressions/devil.gif" border="0"> What many people here need to do is NOT assume things when someone asks a simple question. If you think asking a simple question is actually accusing you or someone else of doing something that would be considered wrong then you need to rethink some things over. There's a saying, <b>"There is never a stupid question."</b> It's too bad that some people are condemned for asking questions. Remember that when people jump to defend themself they usually have something to hide... or they completely misunderstood what was asked to begin with.<hr></blockquote>

I don't condemn for questions either. What I "condemn" is when people say things that very much insinuate that it's, say, Ry's fault he died at 31. Allie has heard that before, and we had talked about it, and that's why I asked. Because I think that's crap.