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Non-CF friends not "getting it"

J

JazzysMom

New member
Charlotte, I am not sure if your ??? was directed toward me or not, but I will answer it anyway....LOL! I was dx at 7 years old & at that time it was due to the digestive part of things. I had a horrid childhood & first few years of school with this. My allergist testing me for everything under the sun & when he ran out of options, he sent me for the sweat test. The rest is history!
 
J

JazzysMom

New member
Charlotte, I am not sure if your ??? was directed toward me or not, but I will answer it anyway....LOL! I was dx at 7 years old & at that time it was due to the digestive part of things. I had a horrid childhood & first few years of school with this. My allergist testing me for everything under the sun & when he ran out of options, he sent me for the sweat test. The rest is history!
 
A

anonymous

New member
Yes it was! Sounds like you've been through it then?! Can't remember if I said, but my daughter was diagnosed at 6 weeks old. What mutation are you?

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
A

anonymous

New member
Yes it was! Sounds like you've been through it then?! Can't remember if I said, but my daughter was diagnosed at 6 weeks old. What mutation are you?

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
A

anonymous

New member
I'm sure you are! My daughter is homozygous delta F508 which I believe is the common gene? Could you give me a bit more info on this from your point of view? Ta.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
A

anonymous

New member
I'm sure you are! My daughter is homozygous delta F508 which I believe is the common gene? Could you give me a bit more info on this from your point of view? Ta.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
J

JazzysMom

New member
I am not exactly sure what you want to know, but here goes. From my experience with myself & others that have this mutation. It involves the lungs/digestion about equally tho the lungs tend to take a bit longer for me from birth to actually having problems. I think it is an advantage to have this particular mutation since I think most studies are based on the majority thing & this being common would classify us with it in the majority. As far as anything else....I believe its based on environment (home, hospital & doctor), more genetics & personal care as well as individual responses to treatments. NO matter what mutation you have.....CF is unpredictable in many ways. What else are you looking for?
 
J

JazzysMom

New member
I am not exactly sure what you want to know, but here goes. From my experience with myself & others that have this mutation. It involves the lungs/digestion about equally tho the lungs tend to take a bit longer for me from birth to actually having problems. I think it is an advantage to have this particular mutation since I think most studies are based on the majority thing & this being common would classify us with it in the majority. As far as anything else....I believe its based on environment (home, hospital & doctor), more genetics & personal care as well as individual responses to treatments. NO matter what mutation you have.....CF is unpredictable in many ways. What else are you looking for?
 
A

anonymous

New member
I know we can't predict what the future holds, but from your point of view, she could lead quite a normal life if we take good care of her. Also, she was picked up on screening which I think is an advantage, because she started her treatments from six weeks old.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
A

anonymous

New member
I know we can't predict what the future holds, but from your point of view, she could lead quite a normal life if we take good care of her. Also, she was picked up on screening which I think is an advantage, because she started her treatments from six weeks old.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 
J

JazzysMom

New member
This is what I can tell you. FOr the most part I was healthy even without doing my treatments on a regular basis most of my life & I will turn 38 next month> I worked fulltime, had daughter from an excellent pregnancy. If I can do all of this without taking proper care of myself over the years.....imagine what could have happened for me if I had. Tho as it has been discussed many times on here....doing treatments, taking meds etc doesnt gaurantee anything. All I am saying is statistically I probably would have been better especially in the long run. Then I also see it this way....if things in my life would have played out differently based on how I cared for myself, I dont think I would have met my husband nor had my baby. I might have had a career (that is an assumption) tho! Good/bad I think things worked out the way they did for me for a reason......
 
J

JazzysMom

New member
This is what I can tell you. FOr the most part I was healthy even without doing my treatments on a regular basis most of my life & I will turn 38 next month> I worked fulltime, had daughter from an excellent pregnancy. If I can do all of this without taking proper care of myself over the years.....imagine what could have happened for me if I had. Tho as it has been discussed many times on here....doing treatments, taking meds etc doesnt gaurantee anything. All I am saying is statistically I probably would have been better especially in the long run. Then I also see it this way....if things in my life would have played out differently based on how I cared for myself, I dont think I would have met my husband nor had my baby. I might have had a career (that is an assumption) tho! Good/bad I think things worked out the way they did for me for a reason......
 
A

anonymous

New member
Thank you all for your support with regard to my question and dilemma. I still don't know what I will do.... I do appreciate all the viewpoints, however, and, if anything, you have all given me courage to stand up and tell them how much they've hurt me.
Lindsey, I will probably email you this week sometime, if that's alright.... my in-laws come tonight for about a week, and I'd like to be able to sit down and write you when I get a chance.
Sandy, I am so sorry for your loss. Perhaps the care pages are a great thing for my friends to write messages on, but again, I worry that they won't use them and I'll just feel more depressed. Anyway, I do appreciate you sharing your story with me.
Sonia
 
A

anonymous

New member
Thank you all for your support with regard to my question and dilemma. I still don't know what I will do.... I do appreciate all the viewpoints, however, and, if anything, you have all given me courage to stand up and tell them how much they've hurt me.
Lindsey, I will probably email you this week sometime, if that's alright.... my in-laws come tonight for about a week, and I'd like to be able to sit down and write you when I get a chance.
Sandy, I am so sorry for your loss. Perhaps the care pages are a great thing for my friends to write messages on, but again, I worry that they won't use them and I'll just feel more depressed. Anyway, I do appreciate you sharing your story with me.
Sonia
 
A

anonymous

New member
Hi Sonia

IT is important to have friends. I have moved many times so I had the opportunities to meet lots of people. I have some friends who I talk on the phone who I grew up with and I have friends who I met in college. There are many people who were special for some reason we lost contact over time. If it was CF related that was their loss. I am extremely picky with who I am friends with. Personally if I was not married I would just hang out with my male friends. I kind of distant myself from them since I am married. Men are easier to get along with lol

You will meet new people. Friendships are a two way street so if you reach out first you might be surprised how it will work out for you. Extend yourself to a new acquaintance and hopefully you will be pleasantly surprised. I would forgive your close friends and don't push information too hard on them. If they wake up that is great but if not, move on but stay in touch. Just remember there are always new people and as we grow older we can become more selective. ~Risa

I have had some friends say to me, oh I had a really bad cold and I thought how in the world do you handle yourself with cf. I got this a lot and it was a nice way of saying, I have been recognized for a struggle. I took this as a compliment.
Risa
 
A

anonymous

New member
Hi Sonia

IT is important to have friends. I have moved many times so I had the opportunities to meet lots of people. I have some friends who I talk on the phone who I grew up with and I have friends who I met in college. There are many people who were special for some reason we lost contact over time. If it was CF related that was their loss. I am extremely picky with who I am friends with. Personally if I was not married I would just hang out with my male friends. I kind of distant myself from them since I am married. Men are easier to get along with lol

You will meet new people. Friendships are a two way street so if you reach out first you might be surprised how it will work out for you. Extend yourself to a new acquaintance and hopefully you will be pleasantly surprised. I would forgive your close friends and don't push information too hard on them. If they wake up that is great but if not, move on but stay in touch. Just remember there are always new people and as we grow older we can become more selective. ~Risa

I have had some friends say to me, oh I had a really bad cold and I thought how in the world do you handle yourself with cf. I got this a lot and it was a nice way of saying, I have been recognized for a struggle. I took this as a compliment.
Risa
 
J

Jane

Digital opinion leader
Sandy,
I never heard of carepages, next time my kids are in the hospital I'll try it. Like you, I have always told everyone we know so that the kids will get some cards or calls. Recently my 14 yr old refuses to tell anyone or allow me to tell because he feels different. He's even told his I.M. friends that he is on vacation. He gets very lonely and is even angry when he and his brother are in together and his brother gets all the attention from friends.
Apparently, when he had returned to school from a clean out in seventh grade his friends made comments like "Look, he returned from the dead" and "don't die on us" when he coughed. I tried to say that it was the kids' way of showing concern, but he decided he was embarassed and didn't like that kind of attention.
Its hard enough being a kid.
 
J

Jane

Digital opinion leader
Sandy,
I never heard of carepages, next time my kids are in the hospital I'll try it. Like you, I have always told everyone we know so that the kids will get some cards or calls. Recently my 14 yr old refuses to tell anyone or allow me to tell because he feels different. He's even told his I.M. friends that he is on vacation. He gets very lonely and is even angry when he and his brother are in together and his brother gets all the attention from friends.
Apparently, when he had returned to school from a clean out in seventh grade his friends made comments like "Look, he returned from the dead" and "don't die on us" when he coughed. I tried to say that it was the kids' way of showing concern, but he decided he was embarassed and didn't like that kind of attention.
Its hard enough being a kid.
 
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