mother driving me nuts!

[Skye]

I find my spouse in this category to some extent. It does feel like they are minimizing things OR trying not to see the big picture. For us, I think my DH truly does not see because I LOOK so healthy even though I WORK incredibly hard to stay that way. It is just routine to him. He has taken me for my tx eval. though.....I STILL looked very healthy and normal though during that time.

So I try to provide descriptors for him and help him understand how difficult things are at times. I will show him a staircase that USE to be difficult for me or describe the feeling of breathing through a straw at times. I also make him understand the decisions I make with some of the appts. I have and I make a big effort to involve him.

I guess my point is......I LOOK normal and the kids usually look pretty normal. So.....sometimes I find it helpful to SHARE some of the struggles so they know more about a typical day. I have even had a woman who is familiar with CF....relative with it......refer to my case as mild. She knew I had a tx. eval. So the level of education out there is just lacking....I am quick to correct that kind of misinformation. That is crazy to even comment that someone has mild CF let alone someone who has been for a tx eval. There are mild symptoms; but, no mild CF.

Thanks for sharing this with us because I think this is an important topic.

 

[Skye]

I find my spouse in this category to some extent. It does feel like they are minimizing things OR trying not to see the big picture. For us, I think my DH truly does not see because I LOOK so healthy even though I WORK incredibly hard to stay that way. It is just routine to him. He has taken me for my tx eval. though.....I STILL looked very healthy and normal though during that time.

So I try to provide descriptors for him and help him understand how difficult things are at times. I will show him a staircase that USE to be difficult for me or describe the feeling of breathing through a straw at times. I also make him understand the decisions I make with some of the appts. I have and I make a big effort to involve him.

I guess my point is......I LOOK normal and the kids usually look pretty normal. So.....sometimes I find it helpful to SHARE some of the struggles so they know more about a typical day. I have even had a woman who is familiar with CF....relative with it......refer to my case as mild. She knew I had a tx. eval. So the level of education out there is just lacking....I am quick to correct that kind of misinformation. That is crazy to even comment that someone has mild CF let alone someone who has been for a tx eval. There are mild symptoms; but, no mild CF.

Thanks for sharing this with us because I think this is an important topic.

 

[Skye]

I find my spouse in this category to some extent. It does feel like they are minimizing things OR trying not to see the big picture. For us, I think my DH truly does not see because I LOOK so healthy even though I WORK incredibly hard to stay that way. It is just routine to him. He has taken me for my tx eval. though.....I STILL looked very healthy and normal though during that time.

So I try to provide descriptors for him and help him understand how difficult things are at times. I will show him a staircase that USE to be difficult for me or describe the feeling of breathing through a straw at times. I also make him understand the decisions I make with some of the appts. I have and I make a big effort to involve him.

I guess my point is......I LOOK normal and the kids usually look pretty normal. So.....sometimes I find it helpful to SHARE some of the struggles so they know more about a typical day. I have even had a woman who is familiar with CF....relative with it......refer to my case as mild. She knew I had a tx. eval. So the level of education out there is just lacking....I am quick to correct that kind of misinformation. That is crazy to even comment that someone has mild CF let alone someone who has been for a tx eval. There are mild symptoms; but, no mild CF.

Thanks for sharing this with us because I think this is an important topic.

 

[Skye]

I find my spouse in this category to some extent. It does feel like they are minimizing things OR trying not to see the big picture. For us, I think my DH truly does not see because I LOOK so healthy even though I WORK incredibly hard to stay that way. It is just routine to him. He has taken me for my tx eval. though.....I STILL looked very healthy and normal though during that time.

So I try to provide descriptors for him and help him understand how difficult things are at times. I will show him a staircase that USE to be difficult for me or describe the feeling of breathing through a straw at times. I also make him understand the decisions I make with some of the appts. I have and I make a big effort to involve him.

I guess my point is......I LOOK normal and the kids usually look pretty normal. So.....sometimes I find it helpful to SHARE some of the struggles so they know more about a typical day. I have even had a woman who is familiar with CF....relative with it......refer to my case as mild. She knew I had a tx. eval. So the level of education out there is just lacking....I am quick to correct that kind of misinformation. That is crazy to even comment that someone has mild CF let alone someone who has been for a tx eval. There are mild symptoms; but, no mild CF.

Thanks for sharing this with us because I think this is an important topic.

 

[Skye]

I find my spouse in this category to some extent. It does feel like they are minimizing things OR trying not to see the big picture. For us, I think my DH truly does not see because I LOOK so healthy even though I WORK incredibly hard to stay that way. It is just routine to him. He has taken me for my tx eval. though.....I STILL looked very healthy and normal though during that time.
<br />
<br />So I try to provide descriptors for him and help him understand how difficult things are at times. I will show him a staircase that USE to be difficult for me or describe the feeling of breathing through a straw at times. I also make him understand the decisions I make with some of the appts. I have and I make a big effort to involve him.
<br />
<br />I guess my point is......I LOOK normal and the kids usually look pretty normal. So.....sometimes I find it helpful to SHARE some of the struggles so they know more about a typical day. I have even had a woman who is familiar with CF....relative with it......refer to my case as mild. She knew I had a tx. eval. So the level of education out there is just lacking....I am quick to correct that kind of misinformation. That is crazy to even comment that someone has mild CF let alone someone who has been for a tx eval. There are mild symptoms; but, no mild CF.
<br />
<br />Thanks for sharing this with us because I think this is an important topic.