coughing

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>norcotrent</b></i>

And Liz. Sorry you feel that way about advocacy. I bet most parents with children who have CF do not feel the same way. I don't anyway.



Warmest Regards,



Trent</end quote></div>

Are you saying that you don't adovcate for your child? The definition of advocating is <b>One that argues for a cause; a supporter or defender</b>. Are you saying that if you don't agree with your doctor then you say nothing, and take his word as gospel? I bet a lot of parents with CF children have the same way of thinking as I. And I bet majority of adult CFers feel the very same way. All my life my doctors have told me to advocate for myself. If I don't speak up about something I don't like or agree with, or have an idea of how to improve myself I speak up. How else are my doctors suppose to know. So yes, I'm quite happy and stick with what I said. No one is a bigger advocate about your health then you (in the case of an adult) For your child - then you are his/her biggest advocate until he/she can do the same for themselves at a later age.

Maybe you simply misunderstood me, but its sad if you don't advocate for your child, or teach your child to do the same for when he/she is an adult.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Is that amy posting anonymously? Its quite funny that she's patting herself on the back like that!</end quote></div>

oh grow up. at least i have the balls to post under a name - i don't cower behind an anon so people can't give me a piece of their mind.

nice that you can dish it, but you can't take it. come talk to me when you aren't hiding in the shadows you coward.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>norcotrent</b></i>
The best answer may not be "Your kid eventually going to get PA."

</end quote></div>

My next sentence was "Most CFers do."

What I stated is truth. What I stated is fact. And if someone doesn't want to know facts or the truth, don't ask a question.

What's wrong with that?

If someone doesn't want to hear reality, this isn't the board to be on.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>norcotrent</b></i>



And Liz. Sorry you feel that way about advocacy. I bet most parents with children who have CF do not feel the same way. I don't anyway.







Warmest Regards,







Trent</end quote></div>



Are you saying that you don't adovcate for your child? The definition of advocating is <b>One that argues for a cause; a supporter or defender</b>. Are you saying that if you don't agree with your doctor then you say nothing, and take his word as gospel? I bet a lot of parents with CF children have the same way of thinking as I. And I bet majority of adult CFers feel the very same way. All my life my doctors have told me to advocate for myself. If I don't speak up about something I don't like or agree with, or have an idea of how to improve myself I speak up. How else are my doctors suppose to know. So yes, I'm quite happy and stick with what I said. No one is a bigger advocate about your health then you (in the case of an adult) For your child - then you are his/her biggest advocate until he/she can do the same for themselves at a later age.



Maybe you simply misunderstood me, but its sad if you don't advocate for your child, or teach your child to do the same for when he/she is an adult.</end quote></div>



I know for a fact that your aggressiveness and assertiveness with your docs has kept you so healthy, Liz. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You are a role-model to us all!

 

[thelizardqueen]

Being my own advocate has gotten the ball rolling to get a new doctor who is much more better then the one I have now, and I've been told that if I decide to switch, that my care will be so much better. This never would have happened for me if I hadn't have spoken up and defending what I believed it. Case in point - my doc didn't want to put me in hospital last May. I fought to be put in hospital, and in the end he relented. It was the best thing I could have done for myself - I became so much more healthier. Who did this for me? No one else, not my doc, but me. So I definitly believe in being your own advocate. If you're a child, then your parent is your advocate, and they should be teaching their children to be advocates themselves for when they become adults, because I hate to say it, but adult care is so much differnt then childrens. You NEED to speak up. Or else you won't be heard.

 

[Jem]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>norcotrent</b></i>Amy, Jem, Liz,
& Anons,I guess you didn't understand my post. I didn't say I
do not appreciate yours or anyone elses comments. I've learned so
much here. Just a thought I had. When someone new or newer has a
question. The best answer may not be "Your kid eventually
going to get PA."Sorry if I was misunderstood.<br>
<br>
<br>
<br>
Don't give it a second thought Trent. Everyone is entitled to their
feelings. By the way, I never said you did not appreciate Amy's or
anyone else's comments. I was responding to your statement:<br>
<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>norcotrent</b></i>amy,Any chance you
could warm your replies a bit. I know everyone has their own way,
yours just always seems so short and cold.Just a
thought.Trent</end quote></div><br>
<br>
<br>
All I said was that I did not find Amy's responses
"cold." I explained that I found them
"informative" and then told her that I appreciated her
taking the time to answer many questions on this forum.<br>
<br>
<br>
We must all remember that it can be difficult to understand how to
take a written statement since we do not know the personality of
the person writing it. Let's just all give each other the benefit
of the doubt and trust that we are all here to support each other
and in that light we can certainly tolerate when statements are
made that we might find "cold".  

 

[norcotrent]

Wow!

I never thought I'd be so easily misunderstood.
You girls have a great way of twisting things. This is pretty simple.
All I suggested to amy was to "warm" it up a bit.
It was only a suggestion.

It'll be awhile.

Trent

 

[anonymous]

hi i am a mother to a forur year with cf, i had no problems with his health until he was eighteen months old( i am in england by the way) he had th rsv virus put plain and simple rhino synctvial virus which is the common cold but however if it left untreated this can cause pneumonia or bronchitis, i myself has had pneumonia and know that it is very painful andf you cough lots of sputum and you lose weight very quickly to put this very bluntly, so flor a cfer to have any of these without ivs could be fatal, i think you do have to be quite to the matter of fact with this disease and i agree with all the girls sorry to say (not) but you are the voice of your children they cannot tell the doctor to go f*** hisself when they feel he his not doing them any good i certainly for one would not let them do anything to my son unless i knew all the risks and what it involved my sons consultant know this and i do not keep silent about it although the majority of the time i very rarely have to cause grief with them but they will know if i have to we arew lucky to have such a good team keeping my son healthy. This last eighteen months have not been good for my son although he has not grew anything bad thankfully but his cold is always wet sounding and causes him to be unwell.

there has only been two months so far where he has not had to be admitted, this last however was for blocked bowels and he has been in a lot of pain and alot of sleepless nights for him, but he has just been released today and he seems brighter and had no pain for the last twenty four hours, so heres hoping he stays that way, if any of you cfers out there have experienced any of these symptoms i would be very grateful to hear from you guys, cold or otherwise

 

[Emily65Roses]

Nothing wrong with suggesting one to warm it up a bit, but I, like many others, see nothing cold in what Amy said. She was simply spreading a fact that she knows to be true (as do most of us), so that the person asking could know and understand the truth. Truth is often helpful.

Oh, and as for the question... I haven't read most of the responses, but just going by the title of the thread... sometimes coughing means PA, sometimes it means MRSA or cepacia or molds or a variety of things. Sometimes it just means s/he has CF. We cough. It's kind of always there, bacteria or not.

 

[JRPandTJP]

Advocacy is essential to changing how we see our relationships within the medical community. THey are not the authority on the health of our children, we must be. We are 110% responsible for understanding this disease, for choosing what we focus on as ways to help our children have the best immune system within the CF spectrum, and for allowing our medical team to sometimes learn from us. I had to advocate for my son each and everyday we were in the hospital to be sure they were not doing unneccessary things to him (like sticking him with a needle one more time to give the last dose of antibiotics after he had blown through 8 IVs and wasn't even a confirmed case for the antibiotics in the first place). I had to advocate for the right to breast feed my son when there was no medical reason not to...and I still advocate for him when we discuss nutrition. However, delivery is everything and I have found it helpful to know when to be firm and when to casually get a point across. In debating a topic with a doc, I find it helpful to go in with research but speak from the heart as a parent who would do anything for their child. Knowing your "stuff" appeals to their intellect, while making sure they see you are sincere about protecting your child's future allows for open discussion and possibly real changes in the future.

I quote a t-shirt I saw recently: "Nice women rarely make history"

Wise and crafty women do!!! Jody

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JRPandTJP</b></i>

Advocacy is essential to changing how we see our relationships within the medical community. THey are not the authority on the health of our children, we must be. We are 110% responsible for understanding this disease, for choosing what we focus on as ways to help our children have the best immune system within the CF spectrum, and for allowing our medical team to sometimes learn from us. I had to advocate for my son each and everyday we were in the hospital to be sure they were not doing unneccessary things to him (like sticking him with a needle one more time to give the last dose of antibiotics after he had blown through 8 IVs and wasn't even a confirmed case for the antibiotics in the first place). I had to advocate for the right to breast feed my son when there was no medical reason not to...and I still advocate for him when we discuss nutrition. However, delivery is everything and I have found it helpful to know when to be firm and when to casually get a point across. In debating a topic with a doc, I find it helpful to go in with research but speak from the heart as a parent who would do anything for their child. Knowing your "stuff" appeals to their intellect, while making sure they see you are sincere about protecting your child's future allows for open discussion and possibly real changes in the future.



I quote a t-shirt I saw recently: "Nice women rarely make history"



Wise and crafty women do!!! Jody</end quote></div>


Very well said Jody!!

Ps. I have a picture with that quote on the top of my blog! Its oh so true!