no, not all threads are like this one. Sorry you had a bad experience this first exposure. I personally don't care, and i will only respond for the most part when it comes to silly trifle drama when i see a good deal of us commenting on something, and relate with them in some way.
Your child has a "terminal" disease. That does NOT mean that they are immediately doomed. If your child has the less aggressive mutations, you make their CF treatment the most important part of your life, and when they are old enough to be aware, they make it the most important part of their life, there is a very strong chance your child could live to be quite old in comparison to what you are probably thinking.
I am 35 years old, and have 99% lung function (last checkup). I (like all of us) have been seriously sick a few times, but I learned that I need to be my own strongest advocate, and not 100% listen to what the doctors say and just take any colorful pill or injection they want to give me. I learned to think for myself. I learned to do my own research into anything health related. I learned that there is TONS of total BS out there from all sides.
I was breast fed till I was 3 1/2 years old due to being diagnosed in the early 70's, and nothing else besides mothers breast milk helped to get rid of my problems at the time. I have had an amazingly strong familiar (especially mother) support structure for my disease.
I know that unless I get hit by a car or die of a "normal" disease like cancer and the like, I will eventually die of CF. Sorry to say it, but the same applies for your child. Your child could die at 13, or your child could die at 60 (or older). It all depends on a LARGE aspect of variables, most of which I have mentioned.
I think we got on your a*s because, regardless what the reasoning was, you presented yourself in a manner that several of us didn't like, or find fitting. But I don't think any of us at any time were every purposely attacking you. You are new to having a child with CF (and possibly new to having a child period), so we should give you slack in that regard. But we are all very jaded (those with CF, and those with close ties with those that have CF), so when some of us get the slightest sniff of WTF, we pounce to rectify it.
I'm no hero by any means. Quite a few people on here hate me for the things I have said. Fine with me, we all need villains. But don't take scorn in one thread, perceived one way or another, as us being mean evil doers or you being wrong or whatever. While this forum is MUCH nicers than tons of other forums out there, one of the things we almost universally don't do is sugar coat something to do with CF. Just realize that, and you will be fine.
Your child has a "terminal" disease. That does NOT mean that they are immediately doomed. If your child has the less aggressive mutations, you make their CF treatment the most important part of your life, and when they are old enough to be aware, they make it the most important part of their life, there is a very strong chance your child could live to be quite old in comparison to what you are probably thinking.
I am 35 years old, and have 99% lung function (last checkup). I (like all of us) have been seriously sick a few times, but I learned that I need to be my own strongest advocate, and not 100% listen to what the doctors say and just take any colorful pill or injection they want to give me. I learned to think for myself. I learned to do my own research into anything health related. I learned that there is TONS of total BS out there from all sides.
I was breast fed till I was 3 1/2 years old due to being diagnosed in the early 70's, and nothing else besides mothers breast milk helped to get rid of my problems at the time. I have had an amazingly strong familiar (especially mother) support structure for my disease.
I know that unless I get hit by a car or die of a "normal" disease like cancer and the like, I will eventually die of CF. Sorry to say it, but the same applies for your child. Your child could die at 13, or your child could die at 60 (or older). It all depends on a LARGE aspect of variables, most of which I have mentioned.
I think we got on your a*s because, regardless what the reasoning was, you presented yourself in a manner that several of us didn't like, or find fitting. But I don't think any of us at any time were every purposely attacking you. You are new to having a child with CF (and possibly new to having a child period), so we should give you slack in that regard. But we are all very jaded (those with CF, and those with close ties with those that have CF), so when some of us get the slightest sniff of WTF, we pounce to rectify it.
I'm no hero by any means. Quite a few people on here hate me for the things I have said. Fine with me, we all need villains. But don't take scorn in one thread, perceived one way or another, as us being mean evil doers or you being wrong or whatever. While this forum is MUCH nicers than tons of other forums out there, one of the things we almost universally don't do is sugar coat something to do with CF. Just realize that, and you will be fine.