Charlotte,
Think about this all for a moment.
You originally asked if everyone progresses at the same rate. You said your daughter is fine now (has mild CF - mildly effected lung function) but you worry that something bad will happen (for example, I would guess, that she'll progress to a less good state - say to moderate state).
Truthfully, now.
Weren't you really truly hoping to hear that there were people with CF who never even progress from mild to moderate?
Weren't you hoping to hear that this is as <i>bad</i> as it gets -
rather than this is as <i>good</i> as it gets?
Cause I'm thinking that's what was going on with you when you posted your first query. That's what you wanted to hear. Which means that not hearing that (no matter how very sensitively put) was going to take your already existing anxiety and bring it right up to boiling.
But there was no way on earth you were ever going to hear that anyone with CF ever has a chance to avoid progression from the honest folks up here on the Adults forum.
Almost every single person who posts on the Adults form has had thieir lung function decrease over their lifetime. (I same "Almost every single person " because of Sean's 99% function, but otherwise I'd say "everyone".)
And many on the Adult form have lost friends, brothers, sisters, cousins, or spouses to CF. They have literally watched/lived the progression from mild > moderate > severe > end stage > death. Denial of the progressive nature of CF is not an option to anyone who has lost a loved one to the disease.
There are CFers who post here look in the mirror every day and see the effects of the effects of the progression - or feel it when they walk across a room. They fight like mad to slow it down to a crawl. They fight like mad to stay positive and enjoy life any way. But with all that fighting, one thing they can not do is stay in fulltime denial of the progression - there is no way to fight progression without acknowledging progression.
So as blunt, impolite, and insensitive as you (and luke) feel people were, they were actually pulling their punches a lot for you.
If you think what people wrote in their posts was blunt, you should hear what we say in our homes when we really get going. There's a lot of morbid, angry, wry, sarcastic battlefield humor in many of our homes (or was before our loved ones died). It <i>is</i> a battle. And battlefield humor and bluntness are part of our arsenal.
We need battlefield humor and bluntness up here. We will not be dropping it because sometimes a new person comes to read or query. Instead, we will be hoping that the new person learns to get down and dirty with the realities of fighting CF as soon as humanly possible. Battlefield humor and bluntness will need to be part of your daughter's arsenal. I suggest that they would be good in your arsenal.
You got to be tough and fight to stay alive and have a good quality of life - or to support your loved one in stay alive and have a good quality of life.
I would not be surprised if you are so upset now that you will just quote this post right back to me peppered with angry and defensive comments. If you need to do that then do that.
But please, Charlotte, think about it. Maybe instead of going into defensive angry posture it would be better to really accept how scared and angry you are and 1) cry your heart out, 2) accept the disease for what it is, and, then, 3) put on your boxing gloves and fight the disease rather than people who have it.
Think about this all for a moment.
You originally asked if everyone progresses at the same rate. You said your daughter is fine now (has mild CF - mildly effected lung function) but you worry that something bad will happen (for example, I would guess, that she'll progress to a less good state - say to moderate state).
Truthfully, now.
Weren't you really truly hoping to hear that there were people with CF who never even progress from mild to moderate?
Weren't you hoping to hear that this is as <i>bad</i> as it gets -
rather than this is as <i>good</i> as it gets?
Cause I'm thinking that's what was going on with you when you posted your first query. That's what you wanted to hear. Which means that not hearing that (no matter how very sensitively put) was going to take your already existing anxiety and bring it right up to boiling.
But there was no way on earth you were ever going to hear that anyone with CF ever has a chance to avoid progression from the honest folks up here on the Adults forum.
Almost every single person who posts on the Adults form has had thieir lung function decrease over their lifetime. (I same "Almost every single person " because of Sean's 99% function, but otherwise I'd say "everyone".)
And many on the Adult form have lost friends, brothers, sisters, cousins, or spouses to CF. They have literally watched/lived the progression from mild > moderate > severe > end stage > death. Denial of the progressive nature of CF is not an option to anyone who has lost a loved one to the disease.
There are CFers who post here look in the mirror every day and see the effects of the effects of the progression - or feel it when they walk across a room. They fight like mad to slow it down to a crawl. They fight like mad to stay positive and enjoy life any way. But with all that fighting, one thing they can not do is stay in fulltime denial of the progression - there is no way to fight progression without acknowledging progression.
So as blunt, impolite, and insensitive as you (and luke) feel people were, they were actually pulling their punches a lot for you.
If you think what people wrote in their posts was blunt, you should hear what we say in our homes when we really get going. There's a lot of morbid, angry, wry, sarcastic battlefield humor in many of our homes (or was before our loved ones died). It <i>is</i> a battle. And battlefield humor and bluntness are part of our arsenal.
We need battlefield humor and bluntness up here. We will not be dropping it because sometimes a new person comes to read or query. Instead, we will be hoping that the new person learns to get down and dirty with the realities of fighting CF as soon as humanly possible. Battlefield humor and bluntness will need to be part of your daughter's arsenal. I suggest that they would be good in your arsenal.
You got to be tough and fight to stay alive and have a good quality of life - or to support your loved one in stay alive and have a good quality of life.
I would not be surprised if you are so upset now that you will just quote this post right back to me peppered with angry and defensive comments. If you need to do that then do that.
But please, Charlotte, think about it. Maybe instead of going into defensive angry posture it would be better to really accept how scared and angry you are and 1) cry your heart out, 2) accept the disease for what it is, and, then, 3) put on your boxing gloves and fight the disease rather than people who have it.